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2024

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

FOREWORD

2024 has been a defining chapter in the evolution of Standing Voice, a year in which ambition met action, and our programmes grew in impact, integration, and scale. Across Tanzania and Malawi, we expanded our reach while tackling the systemic barriers faced by people with albinism. At the centre of this transformation is a simple but powerful truth: health, education, protection, and dignity are not separate needs, they are interconnected rights. This year, we invested in making those connections stronger than ever. By interlinking our programmes more intentionally, we’ve ensured that every point of engagement, whether a clinic visit, a call to our helpline, or a meeting with a trained teacher, can open the door to a wider system of care and support.

Our Skin Cancer Prevention Programme (SCPP) continued to serve as a cornerstone of this work. Now reaching 12,159 individuals through 278 health centres, it is the largest initiative of its kind for people with albinism on the continent. In 2024, we advanced its long-term sustainability, strengthening the foundation for national coverage in both Tanzania and Malawi by 2027, thanks to the continued support of the Pierre Fabre Foundation, the European Union, and our new three-year partnership with the Croda Foundation.

Meanwhile, our Vision and Education Programme (VEP) accelerated its expansion across Tanzania and launched in Malawi for the first time. Thousands accessed specialist low-vision care and assistive devices, while our teacher training initiative equipped educators with the knowledge and confidence to support inclusive education. From classrooms to clinics, this work is enabling children with albinism not only to participate, but to thrive.

Beyond health and education, our Welfare and Social Protection Programme continued to address the ongoing risks of violence, stigma, and exclusion. In 2024, we provided tailored support to survivors, including medical care, counselling, and safer housing, while strengthening peer-led services through partners like the Mothers’ Albinism Action Group. With support from the Evans Cornish Foundation and C-Sema, we launched our first call centre in Mwanza and developed a CRM system to improve helpline response and referrals across both countries.

All of this progress has been made possible through the continued support of our valued funding partners. We are deeply grateful to those who have stood beside us year after year, and to those who joined our mission for the first time in 2024. Our sincere thanks go to: the Pierre Fabre Foundation, European Commission, the Croda Foundation, the United Nations Voluntary Fund for Victims of Torture, the International League of Dermatological Societies, the International Foundation for Dermatology, the Bilton Charitable Foundation, the John Armitage Charitable Trust, Inside the Same, Deloitte Community Fund, The HCD Memorial Fund, the Irish Global Health Network, Global Skin, Global Green Grants, the Souter Charitable Trust, the Evans Cornish Foundation, the Reed Foundation, Manuli Ryco, Altruist, African Albinism Foundation, Glasgow University, and Cambridge University. We also acknowledge the many funders and allies who prefer to remain anonymous, your impact is visible and deeply valued. We also offer our heartfelt thanks to our staff, partners, and the communities we serve. Your resilience, insight, and determination inspire us every day. Together, we are not only responding to today’s urgent needs, we are building structures of care, equity, and justice that will last.

Finally, we wish to extend our deepest gratitude to Jon Beale, who in September 2024, after 13 years of exceptional service, stepped down from the Standing Voice staff team. As a founding member, Jon’s vision, compassion, and tireless commitment have shaped the heart and soul of this organisation. While his daily presence will be greatly missed, we are delighted he will be joining the UK Board as a trustee, continuing to guide the mission he helped build.

As we look to the future, our vision is clear: a world in which the rights of people with albinism are recognised without exception, where inclusion is a lived reality, and where no one is left behind.

With gratitude, Vi. Gal |

Sabine Zetteler Chair of the Board of Trustees 28/04/2024

1. Legal and Administrative Information

1. Legal and Administrative Information
1. Legal and Administrative Information	4
2. Report of the Trustees	5
2.1 Constitution	5
2.2 Board of Trustees	5
2.3 Advisory Board	6
2.4 Organisational Structure	6
2.5 Contribution of Volunteers	7
2.6 Our Purpose and Objectives	8
3. Principal Activities	9
3.1 Geographical Reach (all programmes)	10
3.2 Demographic breakdown	11
3.3 Population pyramids	12
4. Skin Cancer Prevention	13
4.1 Reach and Growth	13
4.2 Geographic Breakdown SCPP	15
4.3 Retention	19
4.4 Screening and Medical Management	22
4.5 Referral Management	24
4.6 Sun Protection Measures	28
4.7 Educational Resources	29
4.8 Community Knowledge	31
4.9 Stakeholder Training	32
5. Vision and Education	35
5.1 Key achievements	36
5.2 Impact on Education	27
5.3 Optometrist Training	39
6. Welfare and Social Protection	40
6.1 The Issue	40
6.2 Albinism Helpline	42
6.3 Advocacy	43
6.4 Counselling and Emergency support	45
6.5 Livelihoods Training and Art Therapy	46
6.6 Human Rights Training	47
6.7 Women’s Albinism Action Group	48
7. Special Events	49
8. Data Management	50
9. Funding Matters	51
10. Governance and Risk	53
11. Accounts	57
11.1 Independent Examiner’s Report	57
11.2 Statement of Financial Activities (SoFA)	60
11.3 Balance Sheet	61
11.4 Basis of Preparation	62

Photo Credits: Kathleen Gerber (p.1) , Claudia Fialho ( p6. p21 , p.30, p.45, p.56, p66), Harry Freeland ( p.7, p.30, p.33, p.34, p.46, p.48, p.49), Elizabeth Wayne (p.9), Clem Kwizombe (p.14, p.28), Ramadan Mfinanga ( p.19, p.20, p.25, p.27, p30, p.31, p.39, p.47, p.50, p.52, p.67), Owen Mchekeni ( p.32 ), Chihiro Tagata Fujii ( p.35, p.36, p.38, p.53 ), Rodrick Mwale (p.43) , Mite (p.45) , Linnéa Román (p.68).

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

1. LEGAL AND ADMINISTRATIVE INFORMATION ~~eee~~

Charity Name	Standing Voice (UK)
Charity No.	No. 1151250
	Charitable Incorporated Organisation (CIO)
_Administrative offices _	Standing Voice UK
	Unit 34b
	Regent Studios
	8 Andrews Road
	London
	E8 4QN
	Standing Voice Tanzania
	P.O. BOX 1902
	Isamilo, Mwanza
	Tanzania
	Standing Voice Malawi
	Area 14
	Plot No.63
	Lilongwe
Registered Addresses	49 Newick Road
	London
	E5 0RP
	P.O. BOX 180
	Ukerewe Island, Mwanza
	Tanzania
	Area 14
	Plot No.63
	Lilongwe
UK	Sabine Zetteler (Chair)
Board of Trustees	Gurmeet Kaur (Treasurer)
	Innocentia Magijima
	Harry Freeland
Malawi	Grace Malera
Board of Trustees	Tadala Chinkwezule
	Jonathan Beale
Tanzania Board of	Katwale Magaga
Trustees	Ally Possi
	Martha Mganga
	Harry Freeland
UK Administration	Harry Freeland, Jonathan Beale, Alfred Thomas
	Giovanna Giuriolo, Ruth Ayarza. Supported by
	A team of dedicated volunteers

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

2. REPORT OF THE TRUSTEES

~~ae~~

2.1 Constitution

Standing Voice (UK) was originally constituted under a Foundation Constitution that came into effect on 14th March 2013, on which date Standing Voice became registered as a Charitable Incorporated Organisation (CIO). The trustees are the only members of the CIO. If the CIO is wound up the members have no liability to contribute to its assets and no personal responsibility for settling its debts or liabilities.

2.2 Board of Trustees

Trustees are appointed by existing trustees through an electoral process. There may be no fewer than three trustees at any one time on the Board of Trustees. There are four at present, and we aim to expand the Board further during 2024.

Standing Voice trustees hold quarterly board meetings. The board also addresses governance matters as and when necessary, through e-mail or other means as necessary.

Decisions are made either at a meeting of the charity trustees, by resolution in writing or electronic form and agreed upon by all of the charity trustees. Agreements may comprise either a single document, or several documents containing the text of the resolution in like form to each of which one or more charity trustees has signified their agreement.

No decision shall be made at a trustee meeting unless a quorum is present at the time the decision is taken. The quorum is two charity trustees, or the number nearest to one third of the total number of charity trustees, whichever is greater, or such larger number as the charity trustees may decide from time to time.

In selecting trustees, consideration is given to the overall breadth of knowledge and experience required of the Board of Trustees. Candidates are typically interviewed by at least two existing trustees and nominations are then presented for approval to the board. Successful candidates, once appointed, receive appropriate documentation about the roles and responsibilities of being a Standing Voice trustee.

Standing Voice has three international boards: Standing Voice UK (4 members), Standing Voice Tanzania (4 members) and Standing Voice Malawi (3 members).

2.3 Advisory Board

The Standing Voice Board of Trustees is supported by an Advisory Board made up of 9 experts from 7 countries (Malawi, Tanzania, Togo, USA, UK, France and Ireland). This includes a wide range of expertise in the fields of public health, dermatology, ophthalmology, education, trauma recovery, genetics, general medicine and surgery, and in-depth knowledge on albinism.

The Advisory Board provides expert guidance to the UK Board of Trustees and staff management team, by advising on strategy, and informing the design and implementation of our programmes. The Advisory Board also works closely with Standing Voice’s wider staff teams, with a primary focus on developing resources and training manuals, leading the delivery of clinical and surgical training, conducting research and publication, and identifying funding opportunities.

Our warmest thanks go to our Advisory Board; Our current Chair of the Board Dr Andrew Sharp, and members; Professor Daudi Mavura, Dr Kelvin Maponda, Professor Melissa Levin, Dr Mark Wheeler, Professor Bayaki Saka, Dr Patricia Lund, Professor Charlotte Baker and Mark Fish.

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Standing Voice Report of the Trustees :
1st January 2024 - 31st December 2024
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2.4 Organisational Structure

The UK Board of Trustees governs Standing Voice on a voluntary basis, meeting quarterly or as needed. As Standing Voice Malawi and Tanzania report to the UK entity, the UK Board holds primary governance responsibility for the organisation’s global operations. Trustees bring diverse expertise spanning international development, human rights, financial management, media, public relations, and the arts.

Standing Voice maintains registered offices in both Malawi and Tanzania, each overseen by a local Board of Trustees. These boards ensure compliance with local governance standards and bring together professionals in law, human rights, organisational management, and national human rights institutions. Day-to-day leadership of our country teams is provided by the Executive Director in Malawi and Operations Director in Tanzania.

Harry Freeland has served as Executive Director of Standing Voice UK since April 2014 and sits on both the UK and Tanzania Boards of Trustees. During the reporting period, the UK team included five paid staff, supported by a dedicated group of volunteers. Globally, Standing Voice’s team includes 22 staff in Tanzania and 12 in Malawi, bringing the total international staff to 39.

People with albinism and their families are central to Standing Voice’s leadership and decision-making structures. They are represented as trustees and senior leaders across our offices in the UK, Malawi, and Tanzania, ensuring that our governance, programmes, and fundraising remain grounded in lived experience and accountable to the communities we serve.

2.5 Contributions of Volunteers

Standing Voice continues to benefit from the invaluable contributions of skilled volunteers from a wide range of professional and academic backgrounds, all united by a commitment to improving the health and wellbeing of persons with albinism Africa.

Throughout the reporting period, our programmes have been strengthened by a network of dedicated local and international volunteers, including researchers, academics, ophthalmologists, dermatologists, surgeons, psychotherapists, geneticists, tailors, and performance artists. These experts have played a critical role in advancing our work by contributing to research, developing educational resources, delivering training, and offering ongoing mentorship to our teams.

This collective engagement has fostered a unique and growing pool of specialised knowledge on albinism that supports our global operations. To formalise and sustain this expertise, we have established an advisory board that works closely with our staff teams, providing strategic guidance and specialist input.

We are deeply grateful to all the volunteers who have generously shared their time, skills, and insight in 2024, helping to shape and expand the reach, quality, and impact of our life-saving programmes.

While there are too many to name individually, volunteer highlights in 2024 included impactful training in Neno and Mwanza districts of Malawi, delivered by Irish volunteers and Advisory Board members Dr. Mark Wheeler and Carol O’Dea, who provided essential capacity building to local clinical teams. We also continued our close collaboration in Malawi with UK-based psychotherapist and trauma specialist Mark Fish, who has been instrumental in developing a system of support for the mental health and wellbeing of individuals impacted by albinism-related trauma. In Tanzania, clinical and surgical training was led by Dr. Andrew Sharp, Mohs Surgeon and Chair of the SV Advisory Board, in partnership with Consultant Dermatologists Dr. Elizabeth Roberts and Dr. Emily Twigg from Leicester Royal Infirmary.

Ongoing oversight of our Vision and Education Programme was provided by Dr. Rebecca Kammer, a USbased optometrist and internationally recognised albinism specialist, working in close partnership with Tanzania-based optometrist and Vision Programme leader Abdy Nyembo.

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

2.6 Our Purpose and Objectives

Standing Voice is an international NGO working in Tanzania and Malawi, with its headquarters in the United Kingdom. Standing Voice’s primary objective is to improve the quality of life of people with albinism in Africa.

The objectives of the CIO are:

I. the advancement of education;

II. the advancement of mental and physical health and the saving of lives;

III. the relief of poverty and the improvement of the conditions of life in socially and economically disadvantaged communities;

IV. the promotion of human rights and the promotion of equality and diversity, in particular but without limitation so as to relieve the needs of people who are socially excluded by assisting them to integrate into society.

For the purposes of the above:

I. “human rights" means human rights as defined in the Universal Declaration of Human Rights and subsequent United Nations conventions and declarations and will be promoted in particular by education about human rights and promoting respect for human rights;

II. people who are "socially excluded" means people who are excluded from society, or parts of society, as a result of one or more of the following factors: financial hardship; youth or old age; ill health (physical or mental); disability or medical condition; discrimination on the grounds of sex, race, ethnic origin, religion, colour, creed or sexuality; poor education or skills attainment.

Standing Voice exists as a catalyst to amplify the voices of others. We aim to empower the people we work with to be the agents of change in their own lives, to build resilience and be healthy and self-sufficient. We currently focus on promoting the social inclusion of people with albinism in Tanzania and Malawi, whilst building the capacity of human rights defenders and partners in other countries in the region. Our team has over 19 years’ experience working with this group and has pioneered innovative models of working that have a proven record of replication and scalability.

People with albinism are commonly the victims of social exclusion in Sub-Saharan Africa, which has led to witchcraft-fuelled murder and marginalisation from health and education services. Our work with this group centres around several programmatic areas: Skin Cancer Prevention, Low Vision and Education, Trauma Recovery, Economic Empowerment and Advocacy. Through our core programmes our support is holistic and comprehensive to reflect the complex needs of people with albinism in their local context. We achieve our objectives by collaborating with a network of local stakeholders (such as government bodies, local community groups and NGOs). All of our initiatives promote the social inclusion of people with albinism by:

I. Advancing understanding and knowledge about albinism in wider society
II. Advocating for progressive state action

III. Developing the skills and expertise of both people with albinism and wider community members

IV. Increasing the positive impact of local service providers

V. Promoting the positive impact of local non-governmental stakeholders (civil society)

The trustees of Standing Voice declare that they have had regard to both the Charity Commission guidance on public benefit and section 17(5) of the Charities Act 2011 on public benefit in carrying out their duties to achieve the charity’s objectives.

3. PRINCIPAL ACTIVITIES

In 2024, Standing Voice delivered a range of integrated programmes aimed at advancing the rights and wellbeing of persons with albinism across Tanzania and Malawi. Our interventions focused on improving access to inclusive healthcare, quality education, sustainable livelihoods, psychosocial support, and trauma-informed care, ensuring that individuals with albinism can live with dignity, safety, and opportunity.

Across all programme areas, we directly reached 12,159 individuals with albinism and engaged thousands more through community outreach, training, and advocacy campaigns, building broader societal awareness and challenging the stigma, discrimination, and systemic exclusion faced by this population.

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9
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Geographical reach (Dec 2024)

Total people with albinism served through all programmes: 12,159

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Tanzania
9,109
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Malawi
3,050
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3.2 Demographic Breakdown - all programmes

	Tanzania			Malawi
	Number	%	Number		%
Total registered clients (across all programs)	9,109			3,050
Female	4,669	51.2%	1,539		50.1%
Male	4,440	48.8%	1,511		49.9%
Average age	18			17
0-4	1,784	19.6%	667		21.9%
5-9	1,567	17.2%	474		15.5%
10-14	1305	14.3%	457		15.0%
15-19	1265	13.9%	416		13.6%
20-24	805	88%	301		9.9%
25-29	598	6.6%	233		7.6%
30-34	473	5.2%	149		4.9%
35-39	399	4.4%	131		4.3%
40-44	289	3.2%	87		2.9%
45-49	221	2.4%	58		1.9%
50-54	154	1.7%	35		1.1%
55-59	89	1.0%	15		0.5%
60-64	78	0.9%	18		0.6%
65-69	41	0.5%	12		0.4%
70-74	18	0.2%	3		0.1%
75-79	8	0.09%	4		0.1%
80 >	14	0.2%	0		0%

Patient Demographics: Gender and Age Distribution

We are encouraged to observe continued gender parity within our patient population. In Tanzania, women and men represent 51.2% and 48.8% of all registered patients, respectively. In Malawi, the distribution is similarly balanced, with 50.1% women and 49.9% men.

Our patient base continues to be dominated by younger age groups, reflecting the broader age structure of the general population in both countries. The average age of registered patients is 18 years in Tanzania and 17 years in Malawi. Notably, 65.0% of patients in Tanzania and 66.0% in Malawi are aged 19 or below.

Across both countries, 9,872 people, representing 85.1% of the total registered population are under the age of 30, with 65.5% aged 19 or younger. By contrast, only 9.7% of people are over 40, and just 4.0% are over 50. This sharp decline in representation among older age groups reflects both the elevated risk of early mortality from skin cancer among persons with albinism and the overall youthful demographic we serve.

This trend is particularly stark in Malawi, where only 7.6% of the entire population of persons with albinism registered in the SCPP are over the age of 40.

The population pyramids below further illustrate this age distribution, clearly showing the predominance of younger individuals in our registered patient community in both Tanzania and Malawi.

Distribution of Registered Patients in Tanzania

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Male
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0-4
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
80+
\ r ™ Female
1000 800 600 400 200 0 0 200 400 600 800 1000
Distribution of Registered Patients in Malawi
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™ Female | Male
0-4
eeee ee
5-9
ee
10-14
15-19
EE ee
20-24
EE ee
25-29
Po
30-34
Po
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
80+
350 300 250 200 150 100 50 0 0 50 100 150 200 250 300 350
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4. SKIN CANCER PREVENTION PROGRAMME

4.1 Reach and Growth

To confront the skin cancer crisis faced by people with albinism in Africa, Standing Voice launched its Skin Cancer Prevention Programme (SCPP) in 2013. Today, this growing network of dermatology clinics is reaching 11,598 people with albinism (PWA) throughout Tanzania and Malawi. Declared best practice by the United Nations in 2017, this programme is delivered in partnership with the Governments of Tanzania and Malawi, and is supported by over 2,000 health professionals and civil society actors. Through the support and close collaboration of the Pierre Fabre Foundation, European Commission, Croda Foundation and International League of Dermatology Societies we have been able to expand the SCPP at scale, transforming it into the largest skin cancer prevention programme for people with albinism globally.

Each clinic provides health education, skin examination, cryotherapy, and referral for surgery if required. Patients also receive sunglasses, locally made sun hats and a fresh supply of sunscreen at every clinic. Our objective is to support governments and civil society to build national programmes of skin cancer prevention that reach every region and serve the total population of people with albinism.

During 2024 we expanded the SCPP into two new regions of Tanzania and two new districts of Malawi. We conducted mapping exercises, training and engagement meetings with govt and civil society to ensure the full mobilisation of PWA and their duty bearers in the delivery of the SCPP, and we continued to deliver training to health professionals and community advocates, who lead the programme's expansion across both countries. We have seen significant growth in the number of patients enrolled across all programme areas, and we are on track for the SCPP to achieve national coverage of both Tanzania and Malawi by the end of 2027.

		Tanzania			Malawi
Indicator
	Target	Achieved	Diference	Target	Achieved	Diference
Nb regions/districts covered by SCPP	21	21	0	18	19	1
Nb clinic sites	132	142	10	59	136	77
Nb clinics delivered during reporting period	264	268	4	119	258	139
Nb patients registered in SCPP	5,940	8,548	2,608	2,160	3,050	890
Nb patients seen in this period	5,940	6,126	186	2,160	2,372	212
New patients seen in this period	810	1,203	393	240	488	248

By the end of 2024, the SCPP had exceeded or met all our targets regarding patient reach and geographical coverage. The programme had registered 11,598 persons with albinism across Tanzania and Malawi, surpassing our combined target of 8,100 patients for both countries by a margin of 30.2%. This includes 8,548 people enrolled in Tanzania and 3,050 people in Malawi.

21 regions of Tanzania were reached during this reporting period (meeting our target of 21 for the end of 2024), while 19 districts of Malawi were reached (surpassing our target of 18 districts). This means that today the SCPP is operational in 67.4% of all regions in Tanzania (21 of 31), and 67.9% coverage of all districts in Malawi (19 of 28). Clinics are now active in 278 hospitals and health centres across both countries. 142 of these facilities are in Tanzania, and 136 are in Malawi. A total of 526 clinics were delivered across both countries during the reporting period. 268 of these were in Tanzania and 258 in Malawi. Since July 2021 and the start of the phase II partnership with the Foundation Pierre Fabre, 1,361 clinics have been delivered across Tanzania and Malawi.

Across the entire year we welcomed a total of 1,691 newly registered patients across both countries, reflecting a combined annual growth rate of 19.8%. This included 1,203 new patients registered in Tanzania (a growth rate of 16.4% from 2023). In Malawi, we saw 488 new patients in 2024 (a growth rate of 19% from 2023).

4.2 Geographic Breakdown SCPP

TANZANIA			Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing	Registered Patients - Disaggregated by Region, Gender, and New/Existing
	Existing patients					New patients				Total patients
Region	M	F	Total	M	Growth in M (%)	F	Growth in F (%)	Total	Total Growth (%)	M	F	Total
Dodoma	245	219	464	18	7.3%	20	12.3%	38	8.2%	263	239	502
Katavi	59	84	143	15	25.4%	11	13.1%	26	18.2%	74	95	169
Tabora	227	251	478	20	8.8%	26	10.4%	46	9.6%	247	277	524
Geita	172	168	340	17	9.9%	25	14.9%	42	12.4%	189	193	382
Singida	150	220	370	23	15.3%	5	2.3%	28	7.6%	173	225	398
Mara	188	211	399	9	4.8%	14	6.6%	23	5.8%	188	211	422
Simiyu	216	169	385	12	5.6%	15	8.9%	27	7.0%	228	184	412
Kagera	145	142	287	9	6.2%	7	4.9%	16	5.6%	154	149	303
Kigoma	123	113	236	6	4.9%	6	5.3%	12	5.1%	129	119	248
Mwanza	376	419	795	30	8.0%	26	6.2%	56	7.0%	406	445	851
Shinyanga	339	272	611	15	4.4%	14	5.1%	29	4.7%	354	286	640
Dar es Salaam	406	453	859	62	15.3%	64	14.1%	126	14.7%	468	517	985
Tanga	288	331	619	39	13.5%	59	17.8%	98	15.8%	327	390	717
Arusha	12	21	33	0	N/A	0	N/A	0	0.0%	12	21	33
Manyara	42	40	82	5	11.9%	9	22.5%	14	17.1%	47	49	96
Morogoro	257	254	511	36	14.0%	38	15.0%	74	14.5%	293	292	585
Pwani	171	197	368	47	27.5%	37	18.8%	84	22.8%	218	234	452
Iringa	47	63	110	26	55.3%	39	61.9%	65	59.1%	73	102	175
Mbeya	75	69	144	46	61.3%	41	59.4%	87	60.4%	121	110	231
Ruvuma	42	69	111	121	288.1	114	165.2%	235	211.7%	163	183	346
Ngombe	0	0	0	35	100%	42	100%	77	N/A	35	42	77
Total	3,580	3,765	7,345	591	16.5%	612	16.3%	1,203	16.4%	4,171	4,377	8,548

Annually, we recorded a 16.5% increase in registered male patients and a 16.3% increase in registered female patients across Tanzania. Our fastest-growing regions were Ruvuma (211%), Mbeya (60.4%), and Iringa (59.1%, all of which are our newest areas of operation. In contrast, the slowest growth was observed in regions where the SCPP has been active the longest: Shinyanga (4.7%), Kigoma (5.1% and 4.9%), Kagera (5.6%), Mara (5.8%), and Mwanza (7%).

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Dar es Salaam
Mwanza
Tanga
Shinyanga
Morogoro Existing patients
Tabora New patients
Dodoma
Pwani
Mara
Simiyu
Singida
Geita
Ruvuma
Kagera
Kigoma
Mbeya
Iringa
Katavi
Manyara
Ngombe
Arusha
0 100 200 300 400 500 600 700 800 900 1000
15
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The top map indicates the distributional density of our registered patients in Tanzania: Dar es Salaam has the ~~most registered patients (985) while Arusha has the fewest (33). The bottom map indicates regional growth~~ rates in registered patients: Ruvuma is grew quickest in 2024 (211.7%), while Shinyanga saw the slowest growth (4.7%).

MALAWI Registered Patients - Disaggregated by Region, Gender, and New/Existing	MALAWI Registered Patients - Disaggregated by Region, Gender, and New/Existing
District Existing patients M F Total M	New patients Total patients
	Growth in M (%) F Growth in F (%) Total Total Growth (%) M F Total
Machinga 125 114 239 8	6.4% 4 3.5% 12 5.0% 133 118 251
Mangochi 197 252 449 16	8.1% 16 6.3% 32 7.1% 213 268 481
Zomba 77 68 145 8	10.4% 11 16.2% 19 13.1% 85 79 164
Phalombe 43 49 92 1	2.3% 3 6.1% 4 4.3% 44 52 96
Mulanje 76 80 156 5	6.6% 8 10.0% 13 8.3% 81 88 169
Balaka 31 27 58 5	16.1% 3 11.1% 8 13.8% 36 30 66
Dedza 69 61 130 13	18.8% 12 19.7% 25 19.2% 82 73 155
Ntcheu 71 63 134 15	21.1% 11 17.5% 26 19.4% 86 74 160
Blantyre 100 106 206 20	20.0% 23 21.7% 43 20.9% 120 129 249
Mchinji 59 49 108 7	11.9% 9 18.4% 16 14.8% 66 58 124
Lilongwe 165 171 336 66	40.0% 62 36.3% 128 38.1% 231 233 464
Chikwawa 25 27 52 14	56.0 10 37.0% 24 46.2% 39 37 76
Thyolo 51 53 104 8	15.7% 13 24.5% 21 20.2% 59 66 125
Chiradzulu 48 45 93 4	8.3% 5 11.1% 9 9.7% 52 50 102
Salima 27 16 43 0	0% 0 0% 0 0.0% 27 16 43
Nkotakota 64 57 121 2	3.1% 2 3.5% 4 3.3% 66 59 125
Ntchisi 39 33 72 0	0.0% 3 9.1% 3 12.5% 39 36 75
Neno 0 0 0 14	N/A 19 N/A 33 100% 14 19 33
Mwanza 0 0 0 14	N/A 26 N/A 40 100% 14 26 40
Rumpi 0 0 0 13	N/A 15 N/A 28 N/A 13 15 28
Dowa 11 13 24 0	N/A 0 N/A 0 N/A 11 13 24
Total 1,278 1,284 2,562 233	18.2% 255 19.9% 488 19.0% 1,511 1,539 3,050

In 2024, we recorded an 18.2% increase in registered male patients and a 19.9% increase in registered female patients in Malawi. The fastest-growing district was Chikwawa, which saw a 46.2% increase, followed by Lilongwe at 38.1%). In contrast, the districts with the slowest growth were Salima, which recorded no increase, Nkhotakota (3.3%) and Phalombe (4.3%). Growth data is not applicable for Neno, Mwanza, as these districts were newly reached in 2024 and therefore do not have a previous baseline. Rumphi and Dowa are also N/A as these locations were reached thorough International Albinism Awareness Day only.

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Mangochi
Lilongwe
Machinga
Blantyre
Mulanje
Zomba Existing patients
Ntcheu New patients
Dedza
Nkotakota
Thyolo
Mchinji
Chiradzulu
Phalombe
Chikwawa
Ntchisi
Balaka
Salima
Neno
Mwanza
Rumphi
Dowa
0 100 200 300 400 500
----- End of picture text -----

The map on the left indicates the distributional density of our registered patients in Malawi: Mangochi has the most patients (481) while Salima has the fewest (43). The map on the right indicates district growth rates in registered patients: the fastest growth was in Chikwawa (46.2%), while Salima saw the slowest growth (0%).

4.3 Retention

Indicator	Tanzania	Malawi	Total
Patients registered end of 2023	7,345	2,562	9,907
Patients registered end of 2024	8,548	3,050	11,598
Patients seen in 2024	6,203	2,372	8,575
New patients seen in 2024	1,203	488	1,691
Existing patients seen in 2024	4,932	1,884	6,875
Patients who did not return in 2024	2,345	687	3,032
Annual retention rate	67.1%	73.5%	69.4%

Across both countries we saw 8,575 individual clients during 2024. This included 6,168 individual patients in Tanzania throughout 2024. Of these, 4,932 clients were returning within 12 months (representing an annual retention rate of 67.1%). In Malawi the picture was similar: in 2024 we saw 2,372 individual patients, of whom 1,875 were returning within 12 months (an annual retention rate of 73.3%). Across both countries in 2024 we saw 8,575 individual patients, of whom 6,875 were returning within 12 months (a combined annual retention rate of 69.4%).

Patient retention is a measure of the impact and effectiveness of the Skin Cancer Prevention Programme (SCPP). It reflects it’s ability to engage people with albinism in ongoing care and ensure consistent access to the services they need to prevent skin cancer.

Maintaining high levels of retention is a complex, shaped by a range of external and personal factors. Barriers to attendance can include

Work commitments, particularly for low-income individuals working in seasonal agriculture
Environmental challenges, such as monsoons, flooding, road damage made worse by climate change
Fear or anxiety around medical consultations or procedures
Financial constraints, including transport to clinics
Childcare responsibilities, which can make it difficult for caregivers to attend hospital
Mistrust of health services, especially public health campaigns (e.g., vaccinations during Covid-19)
Ongoing treatment, meaning patients may not prioritise attending Dermatology services
Lack of awareness, where people simply haven’t heard about upcoming clinics

Recognising these obstacles is vital to improving services, tailoring support, and developing responsive systems that encourage consistent patient participation. Sustaining retention means listening to the needs of our communities and adapting our approach to ensure the best possible access is available where they live.

Patients returning within 12 months @ Patients not returning within 12 months

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26.5%
—\
32.9% >
Tanzania 2024 Malawi 2024
67.1%
73.5%
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While achieving universal retention is challenging, we work hard at maximising accessibility and improving patient retention by identifying and addressing barriers to attendance wherever possible. Our electronic database enables us to closely monitor retention trends and conduct in-depth analysis. In 2024, we focused on understanding variations in retention across different locations, age groups, and genders, helping us pinpoint populations most at risk of dropping out. This insight allows us to direct additional resources towards mobilisation efforts targeted at these vulnerable groups.

We also use CommCare to ask structured questions aimed at identifying the specific facilitators and barriers that influence patients’ ability to attend SCPP clinics. These insights are instrumental in refining our strategies.

Throughout 2024, we continued to scale up our use of direct SMS communications to inform patients about upcoming clinic dates. This approach has strengthened and diversified our mobilisation efforts, making patient outreach more timely and personalised. SMS also enables us to track and follow up with patients who deviate from regular attendance patterns or are identified as high risk. For example, we can flag individuals who haven’t returned to a clinic in over 12 months and contact them directly to explore reasons for disengagement and encourage re-engagement.

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20
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Mobilisation Strategies and Evaluation

To ensure strong patient turnout at clinics, we implement a diverse and targeted range of mobilisation strategies designed to reach people with albinism (PWA) and their families. These efforts are coordinated in close partnership with local Albinism Associations Leaders, Government Social Welfare Departments, and schools, who play a vital role in community outreach. In addition to these grassroots efforts, we utilise mass communication channels, including radio broadcasts, social media platforms, and direct SMS messaging to broaden our reach and ensure timely awareness of upcoming clinics. To assess the effectiveness of these mobilisation efforts, clients are asked a series of questions during clinic registration about how they heard about the service. The table below presents an analysis of the most effective mobilisation channels used during 2024.

How did you hear about the clinic?	Tanzania 2024	Tanzania 2024	Malawi 2024	Malawi 2024	Total	Total
Number of people surveyed	9,862		3,847		13,709
MSN message	2,308	23.4%	186	4.8%	2,494	18.2%
Albinism Associations	5,347	54.2%	2,433	63.2%	7,780	56.8%
Social Welfare Officers / Health Surveillance Assistants	1,204	12.2%	782	20.3%	1,986	14.5%
Teacher / School	689	7.0%	269	7.0%	958	7.0%
Relative / Neighbour	52	0.5%	31	0.8%	83	0.6%
Radio advert	14	0.1%	39	1.0%	53	0.4%
Social Media	167	1.7%	69	1.8%	236	1.7%
Other	81	0.8%	38	1.0%	119	0.9%

From the table above, we observe a similar pattern of success across the different mobilisation methods deployed in both countries. The most common way people with albinism reported hearing about clinics was through their albinism association leaders, accounting for 54.2% of all persons with albinism (PWA) mobilised in Tanzania and 63.2% in Malawi. Social Welfare Officers and Health Surveillance Assistants also played a significant role in patient mobilisation, with 12.2% of patients in Tanzania and 20.3% in Malawi hearing about clinics through these government actors. The education system continued to be a key channel for reaching PWA in both countries, with 7.0% of patients in Tanzania and 7.0% in Malawi reporting that they were referred by teachers or schools. In 2022, Standing Voice introduced direct MSN messaging to patients’ phones in Tanzania. Its impact has continued to grow into 2024, with 23.4% of PWA in Tanzania and 4.8% in Malawi citing this method as how they learned about clinic services. The lower figure in Malawi is attributed to both reduced access to mobile phones and the later rollout of MSN messaging, which began there in 2023.

4.4 Screening and Medical Management

2024 Indicator	Tanzania	Tanzania	Malawi	Malawi	Total	Total
Total patients seen	6,126		2,372		8,498
Number of examinations	9,852		3,847		13,709
Number of cryotherapy procedures7	3,356	34.0%	2,133	55.4%	5,489	N/A
Number of patients receiving cryotherapy	1,468	24.0%	871	36.7%	2,339	27.5%
Number patients referred for surgical procedures	335	5.5%	85	3.6%	420	4.9%
Number of examinations where patients present with…
Severe erythema	70	0.7%	392	10.2%	462	5.4%
Moderate erythema	915	9.3%	1,926	50.0%	2,841	33.4%
Mild erythema	3,642	37.0%	2,799	72.8%	6,441	75.8%
Ectropion	164	2.6%	189	4.9%	353	4.2%
Multiple AKs	1,076	17.6%	763	19.8%	1,839	21.6%
Possible tumours	289	4.7%	80	2.7%	369	4.3%

Clinical data from this reporting period indicates a higher prevalence of skin conditions among patients in Malawi compared to Tanzania. When measured as a proportion of the total number of clinical examinations, Malawi recorded significantly greater use of cryotherapy, with 55.4% of patients receiving the treatment, compared to 34.0% in Tanzania. Actinic keratoses were identified in 19.8% of all examinations in Malawi, slightly higher than the 17.6% recorded in Tanzania. Additionally, rates of erythema (sunburn) were consistently and significantly higher in Malawi—between three and ten times more prevalent across all three severity indicators: mild, moderate, and severe. This disparity is consistent with expectations, given the longer operational history of the SCPP in Tanzania, which has helped establish a stronger baseline of awareness and understanding around skin cancer prevention and protective behaviours among people with albinism. It is also important to note that this data includes new patients, many of whom had never accessed dermatological services before. This influx of first-time clients likely contributes to the higher rates of skin conditions observed, particularly in Malawi.

Prevalence of Clinical Conditions among Patients Seen (January – December 2024)

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100%
Tanzania 2024
Malawi 2024
10%
1%
Severe Moderate Mild Ectropion Multiple Possible
erythema erythema erythema actinic tumours
keratoses
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Provisional doctor’s diagnosis during clinics	2024
Indicator	Tanzania			Malawi
Possible tumours identifed during clinics		322		128
SCC	111	34.5%	71	55.5%
BCC	176	54.6%	41	32.0%
Ophthalmology or other condition	35	10.9%	16	12.5%
Distribution of possible tumours by body part		322		128
Scalp	26	8.1%	3	2.3%
Face, ears, eyelids	128	39.8%	64	50%
Neck	39	12.1%	17	13.3%
Trunk	35	10.9%	14	10.9%
Back and shoulders	41	12.7%	18	14.1%
Upper limbs	31	9.6%	5	3.9%
Lower limbs	22	6.8%	7	5.5%

A total of 450 possible tumours were identified during SCPP clinics across Tanzania and Malawi in this reporting period. In Tanzania, clinicians identified 322 possible tumours in 335 patients (a reduction from 396 possible tumours identified in 2023). Of these, 34.5% of possible tumours were identified as squamous cell carcinomas (SCCs), down from 44.4% in 2023. Basal cell carcinomas (BCCs) accounted for 54.7% of cases, up from 45.7% in the previous year. The remaining 10.9% were classified as other conditions, slightly up from 9.8% in 2023.In Malawi, doctors identified 128 possible tumours in 85 patients, a significant decrease from 255 tumours identified in 2023. Of these, 55.5% were diagnosed as SCCs (down from 61.2%), 32.0% as BCCs (up from 20.4%), and 12.5% as other or unspecified conditions (down from 18.4%).

The distribution of tumours by body part was similar across both countries. The majority were located on sunexposed areas, with the face, ears, eyelids, neck, and scalp accounting for 60.0% of all tumours in Tanzania and 66.3% in Malawi.

Distribution of tumours by body parts in 2024

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----- Start of picture text -----
6%
7% 8.1% 2.3%
3.9%
9.6%
14.1%
12.7%
Tanzania Malawi
322 tumours 128 tumours
50.0%
39.8%
10.9%
10.9%
13.3%
12.1%
Scalp
Face, ears, eyelids
Neck
Trunk
Back and Shoulders
Upper limbs
Lower limbs
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4.5 Referral Management

From January to December 2024, 422 patients were referred for skin cancer treatment by dermatologists at SCPP clinics. This included 335 people in Tanzania and 87 in Malawi.

Patient Referral Status	Patient Referral Status	Patient Referral Status	2024
Indicator	Tanzania			Malawi			Total
Total number of patients sent for referral		335			85		420
Completed treatment	289	86.3%		54	63.6%	343	81.7%
Active treatment	29		8.6%	12	14.1%	41	9.8%
Awaiting treatment	12		3.6%	7	8.2%	19	4.5%
Refused treatment	1		0.3%	3	3.5%	4	1.0%
Undergoing palliative care	2		0.6%	7	8.2%	9	2.1%
Passed away	2		0.6%	2	2.4%	4	1.0%

This year there were 335 referrals made in Tanzania and 87 in Malawi. Encouragingly, at the end of December 2024 the majority of referred patients have either completed their treatment (86.3% in Tanzania and 6.2.4% in Malawi) or are undergoing active treatment (8.6% in Tanzania and 15.3% in Malawi), while 3.6% and 8.2% of patients respectively were awaiting treatment. In new locations the SCPP continues to see patients with advanced tumours. Of people referred in 2024, 2 patients in Tanzania and 7 patients in Malawi are undergoing palliative care support. 4 patients passed away from skin cancer during the reporting period (2 in Tanzania and 2 in Malawi).

A small minority of patients have refused treatment due to a number factors. Patients sometimes refuse treatment in fear of surgery, or because of financial or logistical obstacles involved in leaving their homes, jobs or families and travelling to receive treatment.

Patient referral status 2024

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0.6%
0.6%
0.3%
2.4%
3.6% 8.6% 8.2%
14.1%
3.5%
8.2%
Tanzania Malawi
63.6%
86.3%
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Active treatment Completed treatment Awaiting treatment Refused treatment Palliative care Passed away

Referral Results 2024	Referral Results 2024	Referral Results 2024
Indicator	Tanzania		Malawi			Total
Patients for whom histology results are available		311		74		385
Confirmed diagnoses5		320		106		426
SCC	138	43.1%	15	14.2%	153	35.9%
BCC	105	32.8%	63	59.4%	168	39.4%
Melanoma	1	0.3%	0	0.0%	1	0.2%
Ectropion and other Ophthalmological condition	21	6.6%	2	1.9%	23	5.4%
Other e.g. ulcers, benign lesions, warts, cysts etc.	55	17.2%	26	24.5%	81	19.0%

In 2024, we received histology results for a total of 426 biopsies. 320 of these were from Tanzania and 106 from Malawi. In Tanzania, 43.1% of cases were confirmed as squamous cell carcinomas (SCCs), reflecting a reduction from 49.4% in 2023. Basal cell carcinomas (BCCs) accounted for 32.8% of results, also a decrease from 44% the previous year. Meanwhile, 17.2% were classified as other benign or non-cancerous conditions, marking a notable increase from 6.6% in 2023. Additionally, 6.6% of cases were referred for ophthalmological assessment. In Malawi, 14.2% of biopsy results were confirmed as SCCs, a significant decrease from 38.3% in 2023. BCCs comprised 59.4% of results, up from 51.0% the previous year, while 24.5% were identified as other conditions, an increase from 10.7% in 2023. A total of 23 individuals in Malawi were referred to ophthalmology services.

5. Patients often present with multiple lesions and as a result will have multiple biopsies taken. This is why the number of confirmed diagnoses is greater than the number patients with histology results available

Barnabas Magashi Shilinde, Biharamulo, Kagera district, Tanzania

Total patient referrals and status since 2017 Indicator Tanzania Malawi Total ~~a~~	Total patient referrals and status since 2017 Indicator Tanzania Malawi Total ~~a~~	Total patient referrals and status since 2017 Indicator Tanzania Malawi Total ~~a~~	Total patient referrals and status since 2017 Indicator Tanzania Malawi Total ~~a~~
Total number of patients referred for surgery	1,340	517	1,857
Completed treatment	1,189 88.7%	432 83.6%	1,621 87.3%
Active treatment	53 4.0%	34 6.6%	87 4.7
Waiting for treatment	12 0.9%	7 1.4%	19 1.0%
Refused treatment	18 1.3%	8 1.5%	26 1.4%
Passed away from skin cancer	52 3.9%	24 4.6%	76 4.1%
Passed away from other causes	16 1.2%	12 2.3%	28 1.5%

Across Tanzania and Malawi there has been a total of 1,857 referrals made through the SCPP since 2017. 1,340 of these have been made in Tanzania and 517 in Malawi. The vast majority of patients referred for skin cancer treatment since 2017 have completed their treatment (88.7% in Tanzania and 83.6% in Malawi). Some patients continue to undergo active skin cancer treatment (4.0% in Tanzania and 6.6% in Malawi), which includes 7 patients in Tanzania and 22 patients in Malawi who are currently receiving palliative care treatment. 76 patients registered in the SCPP have passed from from skin cancer since 2017 (52 in Tanzania and 24 in Malawi). 28 people have been documented to have passed away from other causes (16 in Tanzania and 12 in Malawi).

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Patient referral status 2017-2024
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----- Start of picture text -----
1.2% 2.3%
3.9% 4.6%
1.3%
1.5%
4.0% 6.6%
0.9%
1.4%
Active treatment
Completed treatment
Tanzania Awaiting treatment Malawi
Refused treatment
Passed away SC
Passed other causes
88.7% 83.6%
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Rose Temaheri Joseph, Tabora, Tanzania

Percentage of all registered patients referred for skin cancer surgery since 2017

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----- Start of picture text -----
20%
Tanzania
18%
Malawi
16%
14%
12%
10%
8%
6%
4%
2%
0%
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Patient referred for surgical procedures since 2017

15.6% (increase from 13.6% in 2023) of all registered patients in Tanzania and 16.5% (reduction from 19.8% in 2023) of all registered patients in Malawi have been referred for surgery or other treatments since 2017. These are high percentages that demonstrate the scale of the skin cancer crises facing people with albinism in Africa.

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----- Start of picture text -----
“The Skin Cancer Prevention Programme has saved my life af
and I now have hopes to see my children grow.”
Skin Cancer patient
f
27
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4.6 Sun Protection Measures

Indicator		Tanzania	Tanzania			Malawi	Malawi
									Total all
	S2 2021	2022	2023	2024	S2 2021	2022	2023	2024	years
Number of jars of sunscreen distributed	8,894	14,816	22,093	30,108	1,722	12,300 13,839	12,300 13,839 16,592		120,364
Number of individuals receiving sunscreen	3,269	4,651	5,247	6,203	661	1,521	1,978	2,372	25,902
Number of sunglasses distributed	0	3,795	5,214	2,570	15	269	177	198	12,238
Number of hats produced locally	4,381	7,458	13,350	17,676	N/A	N/A	N/A	N/A	42,865
Number of hats distributed	3,269	7,290	8,345	9,685	238	1,431	2,620	3,235	36,113
Number of umbrellas distributed	192	505	692	987	0	29	20	2	2,427
UV protective lip balm	0	0	0	0	0	567	876	503	1,946

In 2024, the SCPP distributed thousands of essential sun-protective items across Tanzania and Malawi, including over 46,700 bottles of sunscreen, over 12,000 wide-brimmed hats, close to 1,000 umbrellas, and just under 2,800 pairs of sunglasses.

Since the launch of the Phase II initiate of the SCPP in July 2021, a total of 173,088 sun-protective items have been distributed to people with albinism across both countries. Among these, 42,865 wide-brimmed hats have been made locally by tailors with albinism at the Standing Voice Umoja Training Centre in Tanzania and distributed free of charge through the SCPP clinical network. In 2024, we continued to expand the production and export of these hats to Malawi, deepening our regional impact while further empowering people with albinism through inclusive, skills-based employment.

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28
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4.7 Educational resources

The SCPP serves as a key platform for disseminating specialist educational resources. Standing Voice has developed a diverse range of resources including booklets, training manuals and films to educate patients, communities, and service providers. In 2024, we printed and distributed 23,800 educational materials across all programme areas. Of these, 13,400 were distributed in Tanzania, 10,400 in Malawi.

To strengthen healthcare capacity, we continued to distribute and apply the Manual of Best Practice in Dermatological Care for Persons with Albinism to support professional training and enhance service delivery.

Total educational resources printed in 2024: 23,800	Total educational resources printed in 2024: 23,800
Educational Resources printed in 2024 300 3,000 200 2,000 300 18,000
	Educational Resources Tz	Mw Total
	Understanding Albinism Booklet 11500	6500 18000
	Moon Shining Bright Picture Book 300	0 300
	Teacher training booklet 1000	1000 2000
	Manual of best practice 100	100 200
	Human Rights booklets 500	2500 3000
	Communicate Advocate booklets 0	300 300
	Total 13,400	10,400 23,800
	Understanding Albinism Booklet Moon Shining Bright booklet Teachers' Booklet Manual of Best practice Human rights booklets Community Advocate Booklet

In 2024, educational resources were distributed through clinics, counselling, training sessions, and directly in schools across Tanzania and Malawi. These included multilingual booklets for people with albinism, families, teachers, and advocates; the illustrated children’s story Moon, Shining Bright!; and the Manual of Best Practice for managing skin cancer in persons with albinism.

Educational films were screened throughout 2023 at advocacy events and clinic waiting areas, including an animated adaptation of Moon, Shining Bright! and Jikubali, a documentary co-produced with local partners. A new EU-commissioned documentary was also launched, highlighting our programmes in Malawi.

By equipping communities with accessible, engaging resources, we are helping thousands of people with albinism, and those around them, to better understand their rights, protect their health, and challenge stigma. From frontline health services to classrooms and community gatherings, these tools are fostering awareness, promoting inclusion, and driving lasting behavioural change across Tanzania and Malawi.

f ‘’I have been attending clinics for the past 8 years. When I compare my health today to how it it f used to be, it's easy to see how my life has changed. These clinics have saved my life. f Siyajali Magenge, Kigoma, Tanzania

4.8 Community Knowledge

Indicator	Tanzania	Malawi	Total
Number of awareness sessions	400	238	638
Number of patients and their relatives present at awareness sessions	12,112	5,149	17,261
Number of communication tool(s) used for the general public	4	5	9
Number of communication tool(s) distributed in the form of a brochure	12,329	7,418	19,747
Number of community advocate training events	7	7	14
Number of ‘community advocates’ trained	85	176	261

Over the past 12 months, the SCPP delivered 638 health awareness sessions across Tanzania and Malawi, reaching a total of 17,261 people, including people with albinism, their family members, teachers, and community representatives. In Tanzania, 400 sessions were delivered to 12,112 participants, averaging 1.6 sessions per clinic. In Malawi, 238 sessions reached 5,149 people, with an average of 1.7 sessions per clinic. Additionally, 19,747 educational booklets were distributed to people with albinism in both countries.

In 2024, we conducted seven Community Advocate Training events in two new regions of operations in Tanzania (Mtwara and Iringa), and seven more across six districts in Malawi (Ntcheu, Mchinga, Mulanje, Zomba, Neno, and Mwanza). These workshops engaged Community Leaders, Health Surveillance Assistants, Social Welfare Officers, and District Committee members of Albinism Associations, equipping them to better advocate for and protect the rights and welfare of people with albinism in their communities.

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----- Start of picture text -----
A mother departs hospital protecting her child fr om the sun using an
, * :
31 umbrella she was given during a Skin Cancer Prevention Clinic
/ ia iil J,
----- End of picture text -----

4.9 Stakeholder Training

In addition to delivering direct health education to people with albinism and their families, the SCPP drives systemic change in Tanzania and Malawi by strengthening the capacity of key duty bearers. These individuals, such as health professionals, educators, and government stakeholders, play a vital role in improving the health, wellbeing, and inclusion of people with albinism, particularly in the prevention and treatment of skin cancer.

In 2024, prior to launching new SCPP clinical services in new locations of each country we conducted 21 stakeholder engagement workshops, 17 of these were in Tanzania and 4 in Malawi. These workshops introduced the programme to key stakeholders, mapped local hospitals, health centres, and patient populations, and identified optimal clinic locations. Sessions also covered understanding albinism, delivering effective health education, clinic setup, data collection, and referral management. Participants included Regional Administrative Secretaries, District Medical Officers, Social Welfare Officers, Special Education Officers, facility heads, and district and regional representatives of the Tanzania Albinism Society (TAS) and the Association of Persons with Albinism in Malawi (APAM). In total, these workshops trained 254 stakeholders, 133 in Tanzania and 121 in Malawi.

During the same period, clinical training was delivered to 103 frontline health professionals, 55 individuals in Tanzania and 48 in Malawi, including Dermatology Officers, Surgical Officers, Medical Assistants, nurses, and Health Surveillance Assistants. Training consisted of one to two days of classroom-based instruction followed by three to five days of hands-on clinical or theatre-based practice for dermatology and surgical staff.

Across all training initiatives in 2024, the SCPP strengthened the capacity of 618 key duty bearers: 273 in Tanzania and 345 in Malawi.

~~Photo: Community Advocate Training Event in Ntcheu Distric~~ t, Malawi in Jan 2024

4.9.i IN FOCUS: 2024 Clinical and Surgical Training

In August 2024, Standing Voice conducted a week-long clinical training workshop in Mwanza, targeting Dermatology and Surgical Officers from across the country. The training specifically focused on enhancing skills in the prevention, early detection, and management of skin cancers in persons with albinism, and was led by experts from the Regional Dermatology Training Centre in Moshi Dr Mavura, alongside a team of Consultant Dermatologists from Leicester Royal Infirmary: Dr Sharp, Dr Roberts and Dr Twigg. Strengthening the clinical workforce across Tanzania in this way is a key element of the SCPP’s efforts to decentralise services and improve early intervention outcomes closer to clients’ homes.

During 2024, Standing Voice delivered nine specialised workshops targeting health professionals, including seven focused on skin cancer prevention and management for people with albinism (PWA) and two dedicated to surgical skill development. Trainings were guided by our Manual of Best Practice for Skin Cancer Prevention and Management in PWA , developed in partnership with the International Foundation of Dermatology, International League of Dermatological Societies, and Pierre Fabre Foundation.

Training sessions combined interactive lectures, practical exercises, and digital data training, tailored to participant roles. Day 1 covered core dermatology and albinism care concepts, including sun exposure effects, skin cancer detection, patient education, and referral pathways. Day 2 focused on surgical skills for Dermatology Officers, covering anatomy, anaesthesia, biopsy, suturing, and post-operative care.

All trainings included pre-and-post-assessments, demonstrating improvements in knowledge, confidence, and clinical competence. Trainees also benefited from mentored clinical practice, applying skills under expert supervision to promote real-world experience and sustainability. In addition in-clinic capacity strengthening and mentorship for health workers has been an ongoing focus throughout the course of the past 12 months.

~~during a surgical training workshop in Mwanza, Tanzania in August 2024~~

The table below shows the large number of actors working across the programme. Today there are 2,217 people involved in delivering the SCPP.

By the end of 2027 we aim to have trained and mobilised over 2,500 frontline workers to lead the delivery of this programme.

SCPP stakeholders	Tanzania	Malawi	Total
Dermatologists and Dermatology Officers	48	28	76
Albinism Association leaders	276	136	412
Social Welfare Officers & Health Surveillance Assistants	171	96	267
Other health personnel: Clinicians, Medical Assistants, Nurses, Surgeons, Histopathologists	228	362	590
Regional & District Medical Officers	120	19	139
First responders / counsellors	24	30	54
Optometrists	20	12	32
Special Education Officers (Regional & District)	114	7	121
Teachers	451	-	451
Tailors	18	-	18
Pharmacists	8	17	25
Media	-	33	32
Total	14,78	739	2,217

5. VISION AND EDUCATION PROGRAMME

People with albinism experience visual impairment due to a deficiency in melanin, which plays a critical role in the development of normal vision. Without proper intervention, this impairment can significantly hinder educational achievement and limit employment opportunities, particularly across Africa. Many individuals with albinism are pushed into subsistence farming, outdoor work that further exposes them to the heightened risk of skin cancer.

In countries like Tanzania and Malawi, access to specialist optometry services remains limited, both in terms of availability and affordability. Systemic discrimination further compounds these challenges, leaving most people with albinism without the vision care or educational support they need. Teachers often lack the training to accommodate students with visual impairments, placing these students at a further disadvantage in school.

Since 2014, Standing Voice has been implementing a comprehensive clinical programme focused on vision care, education, and training to address these barriers. Targeting primarily students, the programme supports a network of eye clinics offering specialist low vision assessments and assistive devices, including monocular telescopes, prescription glasses, sunglasses, and health education materials. It also works to build the capacity of optometrists and educators to better meet the needs of people with albinism.

The Vision and Education Programme (VEP) is delivered in collaboration with the Government of Tanzania and various civil society partners. As of December 31, 2024, the VEP had registered 5,161 individuals with albinism across 15 regions of Tanzania. In 2024, the programme was successfully launched in Malawi, enrolling and screening an additional 209 clients.

~~that it will continue to help my fellow brothers and sisters with albinism in Tanza~~ nia for years to come.”

5.1 Key Achievements in 2024

Total people with albinism supported:

2,757

In 2024, the Vision Programme delivered seven large-scale eye clinics across Tanzania, reaching 2,757 people with albinism. Patients were mobilised from eight regions: Mwanza, Shinyanga, Dar es Salaam, Pwani, Geita, Tanga, Kagera, and Morogoro, ensuring broad geographic coverage and access. The programme also marked a significant milestone with the launch of the Vision and Education Programme (VEP) in Malawi, where the first large scale clinic was held in Lilongwe in July 2024.

All persons attending received individual consultations and comprehensive eye examinations, along with education on albinism and visual impairment. Each participant was also provided with tailored resources and assistive devices to support the daily management of low vision and improve quality of life.

Total assistive vision devices distributed: 8,053

During the reporting period we distributed 8,053 assistive devices including 1,898 pairs of prescription glasses, 2,671, pairs of sunglasses, 1,575 monocular telescopes, 1,909 glasses cases.

Teachers trained: 63

Throughout 2024, the Standing Voice Team delivered specialist training on albinism and inclusive education for 63 teachers from 16 schools in Tanzania.

Students reached through seminars and school outreach 21,728

In addition to our eye clinics, we organised awareness and understanding albinism seminars in both schools and community settings. These events featured interactive talks designed to engage students and promote positive narratives around albinism and personal achievement. Delivered alongside our core clinical programme, the seminars provided one-to-one support for 1,415 students with albinism, while reaching 21,728 of the wider student body across 37 schools. To enrich these sessions, we incorporated book readings and film screenings that further encouraged empathy, inclusion, and understanding. As part of this wider initiative schools and students from across Ukerewe Island were invited to visit the Umoja Training Centre, where they accessed our community library, stocked with a range of Swahili and English books.

5.2 Impact on Education

5.2.i TEACHER TRAINING

In addition to delivering direct clinical care, the Vision Programme works to drive systemic change in Tanzania by strengthening the capacity of teachers to understand and respond to the visual needs of students with albinism. This is critical to enabling the next generation to realise their educational and professional potential and break the cycle of stigma and exclusion.

Since its inception in 2014, the programme has trained 451 teachers, now serving as Vision Ambassadors. These educators champion the rights of students with albinism, fostering a culture of inclusion, accountability, and respect within their schools. They also play a vital role in supporting clinical follow-up—monitoring students’ vision needs, ensuring the appropriate use of assistive devices, and serving as key contacts for Standing Voice. This integrated approach is reinforced by optometrists who accompany the Standing Voice team to schools, providing on-site support and follow-up care for high-risk students.

During the reporting period, 63 teachers across 16 schools received in-depth training on albinism and inclusive education. An additional 21 schools were engaged through student-focused awareness activities. Across all 37 schools, Standing Voice staff worked to deepen understanding of albinism and promote inclusive learning environments.

In partnership with Vision Ambassadors and school leadership, tailored Action Plans were developed to improve the educational participation and wellbeing of students with albinism. Measures implemented included:

Producing large-font examination papers
Repainting blackboards and improving classroom lighting
Reorganising seating to enhance visibility
Providing after-class academic support
Hosting school-wide assemblies to raise awareness about albinism
Promoting sun protection, including sunscreen use and protective clothing
Encouraging peer support, such as reading aloud for visually impaired classmates

Through these efforts, a total of 21,728 students were sensitised during the reporting period. Focus group discussions revealed notable improvements in the self-reported wellbeing and academic performance of students with albinism. Meanwhile, Likert-scale surveys showed increased teacher knowledge and confidence in supporting these students.

In addition, 17,261 people with albinism and their family members were reached with targeted health education at our Vision and Dermatology Clinics.

positive chan ~~ge this initiative brings to their lives”.~~

5.3 Training of Optometrists

To improve access to eye care for people with albinism, Standing Voice partners with the Tanzania Optometric Association, the Kilimanjaro Christian Medical Centre (KCMC) School of Optometry, and a network of international experts to train optometrists in the diagnosis and treatment of low vision specific to this population. In 2024, 13 new optometrists received specialised training, this included 1 new person in Tanzania and 12 people in Malawi, bringing the total number of trained professionals supporting the Vision and Education Programme (VEP) to 32 across both countries.

As part of our ongoing expansion of the VEP into Malawi, we held two dedicated training workshops for optometrists. The first was an online seminar led by Dr Rebecca Kammer, a U.S.-based global expert in low vision and long-term strategic advisor to the programme. This was followed by an in-person workshop in Malawi, led by Tanzanian optometrist Abdi Nyembo, who also serves as a tutor at the KCMC School of Optometry. The trainings reviewed core clinical theory around the unique visual needs of people with albinism, including refractive strategies, prescribing and dispensing techniques, and approaches to specialised low vision screening. In the days that followed, trainees applied their new skills in a supervised clinical setting in Lilongwe, using our CommCare electronic patient management system and working directly with patients.

We are deeply grateful for the leadership of Dr Abdi Nyembo, who oversees the delivery of patient care and optometric training for Standing Voice, and to Dr Rebecca Kammer, a world-renowned authority on low vision in people with albinism, longe terms collaborator of Standing and a key architect of the Vision Programme.

Dr Abdi Nyembo, Head of Optometry and Training

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6. WELFARE AND SOCIAL PROTECTION PROGRAMME

6.1 The Issue

People with albinism are a violently persecuted minority in many African countries. Stigmatised for their unique appearance, many people with albinism are denied opportunities, excluded from services and subjected to damaging myths and misconceptions. In the worst cases, people with albinism are abducted, mutilated, raped and murdered: all because of the colour of their skin. As of December 2024 there were 831 reported human rights violations against persons with albinism in Africa. Tanzania and Malawi have been the continental epicentres of these atrocities; together, these two countries account for half of all human rights violations reported against people with albinism across the continent since 2006. In 2024 violent attacks against people with albinism in Malawi continued to escalate, with a string of attempted abductions and grave violations reported in southern and central districts of the country. 1 in 6 people with albinism living in Machinga District of Malawi have been victim to attack.

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MALAWI

218 human rights violations

reported against people with albinism since 2006

14 15 13

Most recent attacks:

18th July, 2024

Attack on a 3-year old boy with albinism in Mwanza Region, Tanzania

17th June 2024

abduction and murder of a 2-year old girl with albinism in Kagera region, Tanzania

4th May 2024 attack on a 10-year old boy with albinism in Geita Region, Tanzania

TANZANIA

206 human rights violations

reported against people with albinism since 2006

25 Unknown locations 16 16-29 OC) Kagera: Geita: 17 | Shinyanga: 17 | Tabora: 16

In addition to the persistent threats of violence and deeply rooted discrimination, most individuals with albinism whom we support in Tanzania and Malawi face significant barriers in accessing education, housing, financial stability, justice, and political inclusion. Many have experienced profound trauma and require tailored, specialist support to navigate these intersecting challenges.

Across both countries, the Standing Voice First Response Team plays a crucial role in identifying, addressing, and preventing instances of abuse and discrimination against people with albinism and their families. This dedicated team is made up of local Standing Voice staff, social welfare professionals, and individuals with lived experience of albinism-related stigma. Over the past four years, they have undergone training and continuous mentorship from Dr. Mark Fish, a UK based psychotherapist and a member of the Standing Voice Advisory Board.

The First Response Team serves as a critical support system for some of the most at-risk individuals in our network. In 2024, its core areas of intervention included:

6.2 Albinism Helpline

Indicator	Tanzania	Malawi
Regions where people with albinism have access to a helpline	21	19
Calls received through helpline	3,165	3,433

In 2024, Standing Voice continued to strengthen and operate two dedicated toll-free helplines, vital lifelines for people with albinism and their families across Tanzania and Malawi. These helplines offer confidential, accessible platforms to report abuse, raise urgent health or welfare concerns, and seek support in situations of risk or uncertainty. Calls are handled by a trained team skilled in conducting rapid needs assessments and determining the appropriate course of action. Depending on the nature of the call, support may include immediate over-the-phone guidance, referral to a Standing Voice programme including counselling, connection with specialist partner organisations, or, in cases of imminent danger, escalation to law enforcement or emergency services.

By the end of 2024, the helplines were accessible to people with albinism in 21 regions of Tanzania and 19 districts of Malawi, covering all areas where the Skin Cancer Prevention Programme (SCPP) is active. Awareness about these services continues to be raised through literature, outreach clinics, school-based activities, and broader community engagement.

Since their inception in 2021, the helplines have received 3,165 calls in Tanzania and 3,433 in Malawi. Callers seek support for a wide range of critical issues, most commonly:

Reports of violence or abuse
Anticipated or actual threats to personal safety
Access to urgent medical care
Psychosocial support
Challenges related to education, food security, or livelihoods

Beyond their role in crisis response, these helplines are vital tools for ongoing case management and personalised care. They ensure that individuals at risk are not only heard but supported, reinforcing our commitment to leaving no one behind.

During the year, with support from the Evans Cornish Foundation, we established our first dedicated call centre in Mwanza, Tanzania. In parallel, with support from the child rights organisation C-Sema, we began developing a Customer Relationship Management (CRM) system to enhance the documentation, monitoring, and referral of incoming calls. The CRM is scheduled to launch in 2025.

6.3 Advocacy

Protecting the rights and dignity of people with albinism remained at the heart of our work in 2024. Through targeted advocacy, Standing Voice challenged harmful beliefs, promoted inclusion, and pushed for accountability from the ground up.

In Malawi, we confronted harmful myths and deep-rooted misconceptions through a wide-reaching programme of education and engagement. Under the EU-funded Ufulu Wanga project, we ran a four-week pop-up theatre tour across Ntcheu, Machinga, Zomba, and Mulanje, districts with some of the highest rates of attacks. These powerful performances opened space for dialogue, healing, and change. We also partnered with YONECO and Beyond Suncare to produce a ten-part radio series on albinism, broadcast nationwide and reaching millions of listeners with vital information on rights, protection, and inclusion.

In Tanzania, we continued our school- and community-based awareness initiatives, delivering Understanding Albinism seminars and assemblies. We hosted film screenings and supported the Tanzanian Albinism Collective in the production of a new music video, using the arts to elevate voices and shift perceptions.

Beyond our programme countries, Standing Voice remained a strong voice for international accountability and reform. As an organisation with special consultative status at the UN Economic and Social Council (ECOSOC), we contributed evidence and insight to UN mechanisms, including direct engagement with Muluka MitiDrummond, UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism, and Antoine Gliksohn, Executive Director of the Global Albinism Alliance. We also advanced the global visibility of albinism through film and media, including through screenings of our founding documentary In the Shadow of the Sun, acclaimed BBC documentary Born Too White, and through production of new short documentary commissioned by the EU, set for release in 2025.

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6.3.i IN FOCUS: National Action Plan on Albinism

A major advocacy milestone was achieved in December 2024 with the ratification of Tanzania’s National Action Plan (NAP) on Albinism. For the past five years Standing Voice proudly chaired the National Action Plan Committee, that spearheaded drafting and advocacy efforts that culminated in the plan’s development and eventual adoption by the Government of Tanzania. We extend our sincere thanks to all members of the Committee, including the Prime Minister’s Office and its technical team, the Tanzania Albinism Society, Under the Same Sun, and Beyond Inclusion, for their commitment to achieve this historic milestone for the albinism movement in Tanzania.

Building on this momentum, in January 2025, Standing Voice will host a roundtable in Mwanza with the Ministry of Health and national leadership of the Tanzania Albinism Society. The event will establish a dedicated task force to develop a new Quality Assurance Tool, an essential framework for evaluating the impact of the SCPP and strengthening government ownership. Through this initiative we aim to improve long term sustainability, and enhance the quality, reach, and consistency of health and welfare services for people with albinism across Tanzania.

6.4 Counselling and Emergency Tailored Support

Indicator	Tanzania	Malawi
Regions / districts where PWA have access to counselling at clinics	3	8
PWA with access to counselling service at clinics	1,924	1,484
People counselled through peer-to-peer counselling at clinics	140	198
Number of clinics with Counselling delivered	34	47
PWA receiving tailored and emergency support	150	101

During 2024 through the support of the Pierre Fabre Foundation, European Commission and United Nations Voluntary Fund for Victims of Torture we have been able to continue expanding peer to peer counselling and risk assessments at Dermatology clinics throughout Tanzania and Malawi, providing safe and confidential spaces for people with albinism and their families to speak freely about their needs and concerns, process trauma, build confidence and access referral for specialist services where required. By the end of 2024, counselling was accessible to 1,924 people with albinism across three regions of Tanzania and to 1,484 people in eight districts of Malawi. Across both countries a total of 338 individuals received counselling during the reporting period via delivery of 81 clinics. Of the 140 people visiting counselling stations during 2024 in Tanzania 94.3% were female and 5.7% Male. Of the 198 clients who received counselling in Malawi 49% were female and 51% Male.

For the most vulnerable people we work with, many of whom carry acute psychological trauma and have survived witchcraft-related atrocities, our Response Team provides a package of emergency support. This can include relocation to safe-housing, home security improvements; livelihood and food security support; urgent medical intervention; psychosocial, dermatological and palliative healthcare; facilitation of trauma recovery or family reconciliation; and direct advocacy interventions in situations of risk, conflict or exclusion. Across both countries 251 people with albinism received some form of tailored support during 2024. This included ongoing support to 22 survivors of attack and 21 of their family members.

6.5 Umoja Training Centre: Advancing Inclusion, Education and Opportunity

Indicator	Tanzania 2024
People with albinism receiving ongoing skills development or income generation support	58
Community members benefitting from the Umoja Training Centre (UTC)	15,927
Number of school children reached by the UTC	21,728
UTC tailors trained	18
Hats produced by UTC tailors	17,676
Hats produced since initiative begun (2021)	Hats produced since initiative begun (2021) 42,865

Since its establishment by Standing Voice in 2014, the Umoja Training Centre (UTC) on Ukerewe Island has grown into a thriving hub for inclusion, skills development, and community transformation. Designed to support people with albinism and their families, many of whom have been excluded from education and employment, the UTC offers a safe and vibrant space for learning, healing, and empowerment.

The UTC remains home to the Ukerewe Albinism Society and serves as a focal point for a growing network of community-based organisations and peer support groups. In 2024, the Centre continued to deliver life-changing opportunities for education, economic empowerment and inclusion through a broad range of formal training programmes, arts and cultural activities, and therapeutic support for survivors of discrimination and violence.

With the only public library on Ukerewe Island and a dynamic school outreach programme, the UTC plays a vital role in raising awareness of albinism and promoting inclusive education at the grassroots level. This year, the UTC supported the capacity development of numerous community groups and 58 individual trainees with albinism and their family members, offering practical training in: Tailoring, Soap-making, Batik, Radio production, Performing and visual arts, Music and storytelling

With the support of the Pierre Fabre Foundation and Croda Foundation, the Tunajitambua tailoring initiative was able to continue scaling its impact, with UTC-trained artisans producing 17,676 wide-brimmed sun hats distributed free across 278 hospitals and health centres in Tanzania and Malawi. These protective hats form a vital part of Standing Voice’s Skin Cancer Prevention Programme (SCPP), helping individuals with albinism manage sun exposure and reduce cancer risk. 15,927 people from across Ukerewe Island were directly engaged by UTC activities in 2024, through training sessions, community outreach, education campaigns, and public events, affirming the Centre’s status as a beacon of inclusion and empowerment on the Island.

6.6 Human Rights Training

A central goal of our Social Protection and Welfare Programme is to strengthen the capacity of key duty bearers to recognise, uphold, and monitor the human rights of people with albinism across communities in Tanzania and Malawi. Through targeted workshops for community based advocates, and clinic-based awareness seminars, we are building a growing network of albinism ambassadors, including family members, healthcare and welfare professionals, educators, local government officials, law enforcement, members of the judiciary, national human rights institutions, media representatives, religious and traditional leaders, and albinism association leaders.

In 2024, this area of work expanded further in Malawi through the Pierre Fabre Foundation and the European Commission co-funded Ufulu Wanga project, delivered in collaboration with YONECO and Beyond Suncare. This partnership has driving systemic change by embedding human rights protections into local structures and services, and by empowering communities to become agents of inclusion and accountability.

People with albinism and family members participating in rights-based training: 17,217

Operating through dermatology clinics, the First Response Team delivered human rights training to thousands of people with albinism and their families and caregivers. The team leads educational seminars and distributes resources to build understanding of albinism and human rights and raises awareness of best practices for protecting and empowering families impacted by albinism.

By the end of 2024, 17,217 people had received this right-based training at clinics, 12,122 of these people were in Tanzania and 5,149 in Malawi.

Albinism Advocates trained: 261

In 2024, we expanded our efforts in training a network of community based albinism advocates to mobilise, monitor and support the most at-risk people with albinism at the community level. These advocates included albinism association leaders, social welfare professionals and community health workers, many of whom are already engaged in the SCPP and play a critical role in the identification, mobilisation and ongoing care of people with albinism in their communities.

During the reporting period 261 Albinism Advocates were trained and equipped to support and advocate for the rights of persons with albinism in communities across Tanzania and Malawi.

➡ Human rights seminars took place in both formal training and clinical settings in both Tanzania and Malawi 47

6.7 Women’s Albinism Action Group: Empowering Women, Confronting Stigma

Women with albinism, and mothers of children with albinism, face compounded and intersecting forms of discrimination, rooted in gender, disability, and social stigma. In Sub-Saharan Africa, harmful myths persist, including the belief that sexual intercourse with a woman with albinism can cure infertility or HIV/AIDS. These dangerous misconceptions place women at heightened risk of sexual violence, coercion, and HIV infection. Meanwhile, mothers of babies born with albinism are frequently blamed and stigmatised, abandoned by their partners and families, and left solely responsible for their child’s wellbeing. This not only increases their emotional and economic burden but also limits opportunities for income generation, exacerbating poverty and placing both mother and child in greater vulnerability.

In response, the Women’s Albinism Action Group (WAAG) was founded in 2015 with the support of Standing Voice. Today, WAAG is a registered community-based organisation, led by and for women impacted by albinism. Based at the Umoja Training Centre on Ukerewe Island, the group began as an informal peer network and has since evolved into a powerful collective of change-makers advocating for dignity, inclusion, and justice for other mothers and their families.

WAAG provides a safe space for women to share experiences, build solidarity, and mobilise around shared goals. The group works in close partnership with Standing Voice and the Tanzania Albinism Society, offering peer counselling to new mothers of children with albinism via the Skin Cancer Prevention Programme’s clinical network, and conducts homes visits and outreach in communities where stigma remains entrenched. Members travel widely to raise awareness, challenge myths, interrupt abandonment, promote positive narratives, particularly through direct engagement directly with families, in schools, health centres, and other public forums.

Over the past year, WAAG has reached 10,228 individuals through its community outreach events designed to deepen public understanding of albinism. In 2024 the WAAG worked with Standing Voice to provide peer-topeer counselling for 132 women and girls attending dermatology clinics, and delivered ongoing psychosocial support through regular home visits to 19 women and their families on Ukerewe Island. WAAG’s community support helpline received 969 calls in 2024. Since its launch in 2022, the helpline has provided vital over-thephone counselling and advice to women on Ukerewe, with a total of 2,764 calls handled to date.

The WAAG plays a critical frontline role in protecting the rights, health, and wellbeing of women and families impacted by albinism. Through their leadership, lived experience, and collective voice, the women of WAAG are transforming attitudes and forging new pathways to safety, equality, and empowerment.

➡ Established at the UTC as a safety and support group for women impacted by albinism
➡ The WAAG registered as a community-based organisation in 2021
➡ The WAAG provides peer counselling and operates a helpline for women and mothers impacted by albinism; delivers albinism training for welfare professionals ; and conducts community outreach to build public awar ~~eness of the rights and needs of people with albinism~~
➡ The WAAG has sensitised 22,433 people on albinism since 202148

7. SPECIAL EVENTS

In 2024, Standing Voice expanded its visibility and influence by participating in prominent international events while hosting significant national activities to commemorate key milestones and advocacy dates. Throughout the year, our staff were invited to speak at international conferences, workshops, and symposia, showcasing our work and strengthening alliances across the global albinism and health sectors.

In March, Bonface Massah, Executive Director of Standing Voice Malawi, attended a high-level meeting on albinism convened by the Government of Malawi in Lilongwe. This event brought together leading stakeholders committed to advancing the rights and welfare of people with albinism, with a particular focus on renewing Malawi’s National Action Plan on Albinism.

In April, Robi Matiaiga, Monitoring, Evaluation and Learning Manager for Standing Voice Tanzania, participated in GlobalSkin’s inaugural Africa Regional Members Meeting held in Nairobi, Kenya. This landmark gathering convened over 35 patient organisations from 13 African countries to build a stronger, united network of dermatology patient advocates across the continent. Robi delivered a presentation highlighting lessons learned and impact from Standing Voice’s health programmes in Tanzania and Malawi.

In May, Chikondi Kanjadza, Protection and Welfare Officer at Standing Voice Malawi, took part in the Women’s Learning Forum hosted by the African Albinism Network (AAN), also in Nairobi. This unique forum brought together women leaders from across Africa, strengthening their ability to defend human rights within the albinism movement and equipping them with the tools and confidence to advocate for improved healthcare, protection, and inclusion in their communities.

In June and July, Standing Voice hosted a series of activities across Tanzania and Malawi to mark International Albinism Awareness Day (IAAD) and World Skin Health Day (WSHD). These included free dermatology and low vision screenings in Tanzania’s Pwani Region, as well as a public event in Rhumpi, Malawi to honour IAAD. To mark the first officially recognised World Skin Health Day 2025, Standing Voice hosted a special event in Mbeya and Iringa, Tanzania, with support from the International League of Dermatology Societies (ILDS), the International Society of Dermatology (ISD), and CerVe. The event was attended by officials from the Ministry of Health and representatives from the Regional Dermatology Training Centre.

In August and September, we were honoured to welcome Antoine Gliksohn, Executive Director of the Global Albinism Alliance, on a joint visit to Tanzania and Malawi. During his time in the region, Mr. Gliksohn visited project sites, engaged with survivors of trauma and skin cancer, attended training sessions, and participated in a local radio broadcast to share insights from his global advocacy work. In the same period, we also hosted staff delegations from two of our key partners, the Pierre Fabre Foundation and Munuli Ryco. These visits offered important opportunities to showcase the impact of our work and to strengthen strategic collaborations in support of people with albinism.

Throughout the year, Standing Voice also organised national media activities to mark Skin Cancer Awareness Month and World Sight Day. We welcomed high-level visits from representatives of the President’s Office (TAMISEMI), the Prime Minister’s Office, and the Ministry of Health, including the National Eye Coordinator, as well as regional and district education officials in Tanzania and Malawi. We were also hosted leaders from the Tanzania Albinism Society (TAS) and the Association of Persons with Albinism in Malawi (APAM), and reinforced our shared commitment to rights-based change. These engagements received widespread coverage across television, radio, and print media, helping to raise public awareness and build momentum for greater inclusion and protection of people with albinism.

8. DATA MANAGEMENT

In 2024, we enhanced our digital health infrastructure through the continued development and deployment of a custom-built electronic health information system built with Commcare. The platform remained fully operational across the year, underpinning the delivery of core services under the Skin Cancer Prevention Programme (SCPP) and the Vision and Education Programme (VEP) in both Tanzania and Malawi. It also continued to support data management for a third-party albinism initiative in Rwanda, in partnership with Health Alert Organisation.

In line with our commitment to holistic care, we designed and piloted new digital tool to support the Welfare and Social Protection Programme, including a risk assessment form for use during clinic peer counselling sessions. These tools were initially tested on paper during the first half of year, then later built into the Commcare system and tested. Full integration of the form into CommCare is scheduled for the start of 2025.

To meet growing service demands, and to replace old tablets, through the support of the Pierre Fabre Foundation we procured 40 additional tablets during the reporting period, expanding our digital capacity across both countries for the next phase of expansion under the partnership.

Digital health training remained a priority throughout the year. Standing Voice delivered targeted CommCare training to a wide range of health professionals, including newly enrolled dermato-venereology officers, clinical officers, medical assistants, optometrists, and programme staff. By the year’s end, 234 personnel had been trained to use the platform in the field, ensuring more accurate, real-time data collection and more responsive care for people with albinism.

	No. of people trained
Tanzania	80
Malawi	154
Total	234

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Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

9. FUNDING MATTERS ae

GRANT-MAKING POLICY

Standing Voice provides grants to collaborating organisations that require funding to deliver services aligned with our mission. In some cases, the trustees may award grants to independent organisations not in formal partnership with Standing Voice, where there is clear alignment with our charitable objectives.

Grants are directed toward organisations or services that promote the wellbeing and social inclusion of people with albinism in Africa, particularly through initiatives in health, education, welfare, and community development. All grants are subject to strict conditions, including robust financial reporting and accounting standards, strong internal policies (covering safeguarding, finance, and procurement), a proven track record of successful implementation, and full compliance with relevant regulations and international standards, as outlined in Standing Voice’s grant agreements.

FUNDRAISING ACTIVITIES IN THE UK

Standing Voice raises funds from a diverse portfolio of sources, including trust funds, grant-giving foundations and institutions, corporate donors, and individual philanthropists. Additional support is generated through public donations, direct appeals, and organised fundraising events and campaigns. In 2024, our principal sources of funding continued to be grants from charitable foundations and trusts, alongside generous contributions from individuals, corporate partners, and the wider public.

We are proud to have been supported throughout 2024 by a wide range of innovative and committed funders. These include the Pierre Fabre Foundation (PFF), the European Commission (EU), the International Foundation for Dermatology (IFD), the International League of Dermatological Societies (ILDS), the United Nations Voluntary Fund for Victims of Torture (UNVFVT), Deloitte Community Fund, the Bilton Charitable Foundation, the John Armitage Charitable Trust (JACT), the HCD Memorial Fund, Inside the Same, The Edge, Wings of Support, the Irish Global Health Network, Global Green Grants, Glasgow University, Manuli Ryco, the Evan Cornish Foundation, the Souter Charitable Trust, and the Reed Foundation. We are also deeply grateful for the extensive in-kind support received from Altruist, the African Albinism Foundation, and ISDIN, along with many other generous partners, including those who have chosen to remain anonymous.

The trustees extend their heartfelt thanks to all donors and funding partners for their invaluable support, which continues to make our work possible and meaningful. Your commitment enables us to protect, empower and include people with albinism across Tanzania, Malawi, and beyond.

FINANCIAL PERFORMANCE

Income during the period 1st January 2024 to 31st December 2024 amounted to £1,427,928 (January 2023-December 2023: £1,192,750). Voluntary income for 2024 was £1,421,263 (2023: £1,184,639). Of the total income, £1,320,521 (2023: £1,110,711) was restricted and £107,407 (2023: £82,039) was unrestricted. The restricted income consists of donated funds from grant funders and individuals, as well as restricted gift in-kind support amounting the value of £128,182. £603,436 (2023: £484,658) of restricted funding was carried forward. Unrestricted income was mainly from individual donations.

Expenditure amounted to £1,269,270 (2023: £1,070,753) of which £1,207,693 (2023: £1,008,458) was project expenditure, £57,301 (2023: £47,505) was fundraising expenditure and £4,276 (2023: £14,790,) was governance costs. Of the total expenditure, 1,201,744 (2023: £1,003,165) was restricted expenditure and £67,526 (2023: £67,588) was unrestricted expenditure. Standing Voice exercises a policy of setting aside funds to cover 6 months of administration overheads as reserves (£182,485), to cover core costs in the event of the organisation encountering a period of reduced income. The charity free reserves at the year were £114,690.

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

At the end of the financial year ending 31st December 2024, the charity carried forward a balance of £718,126 (2023: £559,468), of which £182,485 was available for salaries and overheads. The organisation also awaited funding responses from major grant funders. The trustees deemed reserve funds held to be sufficient, keeping in consideration the overheads budget allocations in restricted funds held, and the status of committed funding from new and existing donors due for disbursement in 2025 amounting to over £1,150,000.

EXPENDITURE SUPPORTING KEY OBJECTIVES

Standing Voice has been able to increase expenditure towards its life saving programmes in 2024 to £1,269,270 (£1,070,753 in 2023). This has been vital when our clients’ needs remain under pressure due to unstable global economic conditions, forthcoming elections in both Tanzania and Malawi, increasing risk of climate change-related disasters, and continued threat of attack against people with albinism. This increase in project expenditure (£198,517 increase on 2023) has been carefully planned and deemed viable based on holding and securing new multi-year funding partnerships in 2024. Expenditure on our projects promoting the wellbeing and social inclusion of people with albinism is consistent with Standing Voice’s objectives as defined in its governing constitution.

People with albinism in Tanzania and Malawi continue to benefit from capacity development; improved dermatological and ophthalmological health services; innovative trauma recovery interventions; increased access to education; and positive advances in local and international awareness on albinism resulting from Standing Voice’s project activity. Additionally, through training and coordination of health, social care and education service providers we are building a sustained, scalable and locally driven response to this issue in both countries.

The charity’s projects this year have grown substantially both in terms of geographical reach, and depth of the interventions being delivered across both countries of operation. Whilst growing the footprint of its work Standing Voice is progressively interlinking services, to ensure individual projects act as gateways for other essential services. Scaling up geographical reach, alongside investing in a holistic approach to our work has led Standing Voice to achieve its objective of combating human rights abuses against people with albinism by further advancing integration in society in 2024.

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

Standing

10. GOVERNANCE AND RISK

FUTURE PLANS OF THE CHARITY

In 2025, Standing Voice will expand the reach and impact of it’s core programmes, enhancing access to dermatology, eye care, psychosocial support, and livelihoods services for thousands of underserved people with albinism and their families in Tanzania and Malawi. We will continue to scale our training initiatives, empowering community leaders, teachers, health professionals, and civil society groups to build an informed and responsive society that champions the rights and inclusion of persons with albinism.

In January 2025, we will begin a new partnership with Inside the Same and Mama Mzungu to produce disposable sanitary pads, which will be distributed for free to thousands of women and girls across Tanzania through the Skin Cancer Prevention Programmes Clinical network.

In April in Malawi, we will launch the Tutakilane Initiative, a new European Commission-funded project that builds on the progress of the Ufulu Wanga Project. While Ufulu Wanga focused on healthcare, human rights and protection, Tutakilane will shift the focus toward economic empowerment, expanding access to vocational training, employment opportunities, and sustainable livelihoods for people with albinism.

In both countries, 2025 will mark a period of consolidation and growth. We will expand and strengthen our service delivery while intensifying advocacy to promote long-term sustainability. In Tanzania, we will leverage the recently adopted National Action Plan (NAP) on Albinism, and advocate for its renewal in Malawi, to deepen government ownership of the Skin Cancer Prevention Programme (SCPP). This will include forming a national task force with Tanzania’s Ministry of Health to develop a Quality Assurance Tool, designed to help integrate the SCPP into the national health system and establish clear, government-led mechanisms for monitoring programme quality and performance.

We are also excited to extend our support beyond Tanzania and Malawi, by initiating collaborations with albinism organisations in Zimbabwe, Uganda, and Rwanda. By sharing over 15 years of insights and experience from implementing the SCPP model, we aim to strengthen local initiatives and accelerate progress in these countries.

In October 2025, Standing Voice will co-host the first-ever World Forum on Skin Cancer Prevention and Management for Persons with Albinism, in partnership with the International League of Dermatological Societies (ILDS) and the Global Albinism Alliance. This landmark event will convene leading health professionals, albinism advocates, and funders from around the world to develop a coordinated global action plan to end the skin cancer crisis disproportionately affecting this population.

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Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

RISK

Risk Management

The primary risk to Standing Voice, and, by extension, the communities we serve, is limited staff capacity to meet the growing scale and complexity of our programmes. As we deepen our work and expand our programmes, we continue to uncover the diverse and interconnected challenges faced by people with albinism. Addressing these evolving needs requires sustained investment in a skilled, adaptable, and wellsupported team.

We mitigate this risk through a diversified funding portfolio and the continuous pursuit of new grant opportunities. We also closely monitor our expenditure pipeline to ensure strategic recruitment and workforce planning can be aligned with programme growth and donor timelines.

To guard against operational risks, including maladministration, we maintain strong governance and oversight systems across all areas of our work in Tanzania and Malawi. These include regular monitoring and evaluation processes, robust internal controls, and comprehensive financial and programme reporting. All fund disbursements are subject to detailed review and authorisation by Standing Voice UK management.

Executive Management in the UK oversees all international fund transfers through a two-step foreign exchange approval process, which requires dual sign-off from authorised administrators. In addition, UKbased leadership and trustees conduct regular site visits to offices, partners, and project locations, helping to strengthen accountability and proactively identify and address emerging risks.

Additional Risks

Other risks facing the organisation include:

[Political and regulatory instability:][ Changes in government policy or banking regulations, ] particularly regarding foreign currency, can impact our ability to transfer and manage funds efficiently.
[Security threats:][ In some regions, heightened security risks may affect the safe delivery of services ] or the wellbeing of staff and beneficiaries.
[Donor dependency:][ Over-reliance on a small number of key funders may pose sustainability risks in ] the event of funding cuts or shifts in donor priorities.
[Technological limitations:][ In areas with limited infrastructure, challenges related to internet access ] and data management may hinder communication, reporting, and implementation of digital tools like our CRM system.
[Climate-related disruptions: ][Extreme weather or environmental changes can impact access to ] project sites, disrupt community outreach, or exacerbate health vulnerabilities among our beneficiaries.

We remain committed to identifying, monitoring, and mitigating these and other risks as part of our ongoing responsibility to safeguard the effectiveness, integrity, and sustainability of our work.

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

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RESPONSIBILITIES OF THE BOARD OF TRUSTEES

The Trustees are responsible for managing the affairs of the CIO and may for that purpose exercise all the powers of the CIO.

It is the duty of each charity trustee:

to exercise his or her powers and to perform his or her functions in his or her capacity as a trustee of the CIO in the way he or she decides in good faith would be most likely to further the purposes of the CIO; and
to exercise, in the performance of those functions, such care and skill as is reasonable in the circumstances having regard in particular to:
any special knowledge or experience that he or she has or holds himself or herself out as having; and,
if he or she acts as a charity trustee of the CIO in the course of a business or profession, to any special knowledge or experience that it is reasonable to expect of a person acting in the course of that kind of business or profession.

The Board of Trustees are responsible for complying with the requirements of the Charities Act 2011 with regard to the keeping of accounting records, to the preparation and scrutiny of statements of account, and to the preparation of annual reports and returns for submission to the Charity Commission.

PUBLIC BENEFIT

In accordance with section 17 of the Charities Act 2011 the Trustees confirm that they have had regard to the Charity Commission’s guidance in relation to public benefit. The Trustees have referred to the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in planning the charity’s future activities. In particular, the Trustees have considered how planned activities contribute to the aims and objectives they have set.

TRUSTEES’ DECLARATION

There is no relevant information of which the auditor is unaware. Each Trustee has taken all the necessary steps that he/she ought to have taken as a Trustee in order to inform themselves of all relevant information, and to establish that the auditor is aware of that information.

Approved by the Board of Trustees and signed on its behalf by:

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Sabine Zetteler
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Chair of the Board of Trustees 5/04/2025

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

11. ACCOUNTS ~~aaa~~

11.1 Independent Auditor’s Report to the Trustees of Standing Voice (UK)

Opinion

We have audited the financial statements of Standing Voice (UK) (the ‘CIO’) for the year ended 31 December 2024 which comprise the Statement of Financial Activities, the Balance Sheet and notes to the financial statements, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

give a true and fair view of the state of the CIO’s affairs as at 31 December 2024, and of its incoming resources and application of resources, for the year then ended;
have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
have been prepared in accordance with the requirements of the Charities Act 2011.

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the CIO in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’s Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion.

Conclusions relating to going concern

In auditing the financial statements, we have concluded that the trustees’ use of the going concern basis of accounting in the preparation of the financial statements is appropriate.

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the charity’s ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue.

Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report.

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

Other information

The trustees are responsible for the other information. The other information comprises the information included in the trustees’ report, other than the financial statements and our auditor’s report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact.

We have nothing to report in this regard.

Matters on which we are required to report by exception

We have nothing to report in respect of the following matters in relation to which the Charities (Accounts and Reports) Regulations 2008 require us to report to you if, in our opinion:

the information given in the financial statements is inconsistent in any material respect with the trustees’ report; or
sufficient accounting records have not been kept; or
the financial statements are not in agreement with the accounting records; or
we have not received all the information and explanations we require for our audit.

Responsibilities of trustees

As explained more fully in the trustees’ responsibilities statement in trustees’ report, the trustees are responsible for the preparation of financial statements which give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the CIO’s ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the CIO or to cease operations, or have no realistic alternative but to do so.

We have been appointed as auditor under section 144 of the Charities Act 2011 and report in accordance with regulations made under section 154 of that Act.

Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor’s report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements.

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

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We obtained an understanding of the legal and regulatory frameworks that are applicable to the CIO and determined that the most significant are the Statement of Recommended Practice 'Accounting and Reporting by Charities' (SORP 2019), in accordance with the Financial Reporting Standard applicable in the UK (FRS 102) applicable to smaller entities and the Charities Act 2011.
We understood how the CIO is complying with those frameworks via communication with those charged with governance, together with the review of the CIO’s documented policies and procedures.
The audit team, which is experienced in the audit of charities, considered the charity’s susceptibility to material misstatement and how fraud may occur. Our considerations included the risk of management override.
Our approach was to check that the income from grants and donations was properly identified, related expenditure was appropriately charged in accordance with any restrictions that may have been in place and that payments overseas were made to valid organisations. This included reviewing journal adjustments and unusual transactions.

A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council’s website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our auditor’s report.

Use of our report

This report is made solely to the CIO’s trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. Our audit work has been undertaken so that we might state to the CIO’s trustees those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the CIO and the CIO’s trustees as a body, for our audit work, for this report, or for the opinions we have formed.

Knox Cropper LLP Statutory Auditor 65 Leadenhall Street London EC3A 2AD

Knox Cropper LLP is eligible for appointment as auditor of the charity by virtue of its eligibility for appointment as auditor of a company under section 1212 of the Companies Act 2006.

31 October 2025

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

11.2 Statement of Financial Activities (SoFA)

Statement of Financial Activities (Incorporating an Income and Expenditure Account) for the period ended 31 December 2024:

Notes Unrestricted funds (£) Restricted income funds (£) Total 2024 (£) Total 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) Total 2024 (£) Total 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) Total 2024 (£) Total 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) Total 2024 (£) Total 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) Total 2024 (£) Total 2023 (£)
Income and endowments from: Donations and legacies Income from investments Other income	100,742 6,665 -	1,320,521 - -	£1,421,263 6,665 -	1,184,639 3,111 5,000
Total income and endowments 2	107,407	1,320,521	1,427,928	1,192,750
Expenditure on: Raising funds Charitable activities Other expenditure	2,865 60,385 4,276	54,436 1,147,308 -	57,301 1,207,693 4,276	47,505 1,008,458 14,790
Total expenditure 3	67,526	1,201,744	1,269,270	1,070,753 121,997 121,997 121,997 437,470
Net income/(expenditure) and net movement in funds for the year Net income/(expenditure) before other recognised gains/(losses) Net income/(expenditure) and movement in funds for the year Total funds brought forward	39,881 39,881 39,881 74,809	118,777 118,777 118,777 484,659	158,658 158,658 158,658 559,468
Total funds carried forward	114,690	603,436	718,126	559,467

The Statement of Financial Activities includes all gains and losses recognised in the year. All the activities derive from continuing operations during the above periods.

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

11.3 BALANCE SHEET

Balance Sheet as at 31 December 2024

Notes Unrestricted funds (£) Restricted income funds (£) December 2024 (£) December 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) December 2024 (£) December 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) December 2024 (£) December 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) December 2024 (£) December 2023 (£)	Notes Unrestricted funds (£) Restricted income funds (£) December 2024 (£) December 2023 (£)
Fixed assets Tangible investments 4 Intangible investments	-	40,573	40,573	29,507
Total fixed assets	-	40,573	40,573	29,508
Current assets Debtors and prepayments 5 Cash at bank and in hand	43,997 80,473	- 581,368	43,997 661,841	25,519 543,041
Total current assets	124,470	470,697	705,838	568,560
Liabilities Creditors: amounts falling due within one year 6 Net current assets/(liabilities)	9,780 114,690	18,505 562,863	28,285 677,553	38,600 529,960
Total assets less current liabilities	114,690	603,436	718,126	559,468

Net assets	114,690	603,436	718,126	559,468
Funds of the charity Unrestricted funds Restricted income funds 7 Endowment funds	114,690 - -	- 603,436 -	114,690 603,436 -	74,809 484,659 -
Total funds	114,690	603,436	718,126	559,468

The financial statements were approved and authorised for issue by the Trustees on 28/04/2024 and signed on their behalf by:

Gurmeet Kaur

Treasurer of the Board of Trustee

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

BASIS OF PREPARATION

Basis of preparation and accounting policies for year ended 31 December 2024

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) – Charities SORP (FRS 102), and the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102).

Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy notes.

1. ACCOUNTING POLICIES

This list of accounting policies has been applied by the charity.

|Incoming Resources
~~|~~|Incoming Resources
~~|~~| |---|---| |Recognition of incoming
resources
~~|~~|These are included in the Statement of Financial Activities (SoFA) when:
- the charity becomes entitled to the resources;
- the trustees are virtually certain they will receive the resources; and
- the monetary value can be measured with sufficient reliability
~~|~~| |Incoming resources with
related expenditure|Where incoming resources have related expenditure (as with fundraising or contract
income) the incoming resources and related expenditure are reported gross in the
SoFA.| |Grants and donations|Grants and donations are only included in the SoFA when the charity has
unconditional entitlement to the resources.| |Tax reclaims on donations
and gifts|Incoming resources from tax reclaims are included in the SoFA at the same time as
the gift to which they relate.| |Contractual income and
performance-related grants|This is only included in the SoFA once the related goods or services have been
delivered.| |Gifts in kind|Gifts in kind are accounted for at a reasonable estimate of their value to the charity or
the amount actually realised.
Gifts in kind for sale or distribution are included in the accounts as gifts only when
sold or distributed by the charity.
Gifts in kind for use by the charity are included in the SoFA as incoming resources
when receivable.| |Donated services and
facilities|These are only included in incoming resources (with an equivalent amount in
resources expended) where the benefit to the charity is reasonably quantifiable,
measurable and material. The value placed on these resources is the estimated value
to the charity of the service or facility received.| |Volunteer help|The value of any voluntary help received is not included in the accounts but is
described in the trustees’ annual report.| |Investment income|This is included in the accounts when receivable.| |Investment gains and
losses|This includes any gain or loss on the sale of investments and any gain or loss
resulting from revaluing investments to market value at the end of the year.|

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

Expenditure and Liabilities ~~eee~~	Expenditure and Liabilities ~~eee~~
Liability recognition ~~eee~~	Liabilities are recognised as soon as there is a legal or constructive obligation committing the charity to pay out resources. ~~eee~~
Governance costs	Include costs of the preparation and audit of statutory accounts, the costs of trustee meetings and cost of any legal advice to trustees on governance or constitutional matters.
Grants with performance conditions	Where the charity gives a grant with conditions for its payment being a specific level of service or output to be provided, such grants are only recognised in the SoFA once the recipient of the grant has provided the specified service or output.
Grants payable without performance conditions	These are only recognised in the accounts when a commitment has been made and there are no conditions to be met relating to the grant which remain in the control of the charity.
Support Costs	Support costs include central functions and have been allocated to activity cost categories on a basis consistent with the use of resources, e.g. allocating property costs by floor areas, or per capita, staff costs by the time spent and other costs by their usage.

Assets	Assets
Tangible fixed assets for use by charity	These are capitalised if they can be used for more than one year, and cost at least £5,000. They are valued at cost or a reasonable value on receipt.
Investments	Investments quoted on a recognised stock exchange are valued at market value at the year-end. Other investment assets are included at trustees' best estimate of market value.
Stocks and work in progress	These are valued at the lower of cost or market value.

2. ANALYSIS OF INCOME AND ENDOWMENTS

Analysis 2024 (£) 2023 (£)	Analysis 2024 (£) 2023 (£)	Analysis 2024 (£) 2023 (£)	Analysis 2024 (£) 2023 (£)
Donations and Legacies	Restricted income Unrestricted income	1,320,521 100,742	1,110,711.00 73,928.00
		1,421,263	1,184,639.00
Income from investments	Bank interest	6,665	3,111.00
		6,665	3,111.00
Total income and endowments		1,427,928	1,187,750.00

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

3. ANALYSIS OF RESOURCES EXPENDED

Analysis 2024 (£) 2023 (£)	Analysis 2024 (£) 2023 (£)	Analysis 2024 (£) 2023 (£)	Analysis 2024 (£) 2023 (£)
Costs of generating voluntary income	Staff costs Support costs	45,063 12,239	37,299 10,206
		57,301	47,505
Charitable activities Governance costs	Staff costs Support costs Direct project costs Auditors fee Accounting advice & payroll services		149,196 40,823 818,439
		180,250 48,956 978,487
		1,207,693	1,008,458
		2,650 1,600	12,840 1,950
		4,276	14,790
Total		1,269,270	1,070,753

4. TANGIBLE FIXED ASSETS

Freehold land and buildings (£) Other land and buildings (£) Plant, machinery and motor vehicles (£) Fixtures, fittings and equipment (£) Total (£)	Freehold land and buildings (£) Other land and buildings (£) Plant, machinery and motor vehicles (£) Fixtures, fittings and equipment (£) Total (£)	Freehold land and buildings (£) Other land and buildings (£) Plant, machinery and motor vehicles (£) Fixtures, fittings and equipment (£) Total (£)	Freehold land and buildings (£) Other land and buildings (£) Plant, machinery and motor vehicles (£) Fixtures, fittings and equipment (£) Total (£)	Freehold land and buildings (£) Other land and buildings (£) Plant, machinery and motor vehicles (£) Fixtures, fittings and equipment (£) Total (£)	Freehold land and buildings (£) Other land and buildings (£) Plant, machinery and motor vehicles (£) Fixtures, fittings and equipment (£) Total (£)
Cost At 1 January 2024 Additions	- -	- -	14,608 31,594 24,956.16	- -	14,608 31,594.00 24,956.16
At 31 December 2023	-	-	71,158.16	-	71,158.16
Depreciation At 1 January 2024 Charge for the year	- -	- -	16,695.11 13,889.77	- -	16,695.11 13,889.77
At 31 December 2024	-	-	30,584.88	-	30,584.88
Net Book Value
At 31 December 2024	-	-	40,573.28	-	40,573.28

At 1 January2024	-	-	54,463.05	-	54,463.05

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

5. DEBTORS AND PREPAYMENTS

Analysis of debtors	Amounts falling due within one year (£) Amounts falling due after more than one year (£)
	2024 2023 2024 2023
Prepayments and accrued income	43,997 25,519 - -
Total	43,997 25,519 - -
6. CREDITORS AND ACCRUALS
Analysis of creditors Amounts falling due within one year (£) Amounts falling due after more than one year (£) 2024 2023 2024 2023 Other creditors 5,904.11 7,014.00 - - Accruals and deferred income 22,381.30 31,586.00 - - Total 28,285.41 38,600.00 - - ~~——~~
7. RESTRICTED FUNDS

Fund Name	Purpose and Restrictions
Skin Cancer Prevention	Skin cancer prevention services for people with albinism in Tanzania and Malawi
Research	Research into access to health for people with albinism in Tanzania
Awareness Raising	Creating and promoting positive imagery of people with albinism in Africa to raise
	awareness
Vision and Education	Low Vision services and promotion of education for people with albinism in
Programme	Tanzania and Malawi
Umoja Children Centre	Building of a centre for learning and healing for children with albinism in Tanzania
Malawi Operations	Operational overheads for Standing Voice’s team based in Lilongwe
Welfare Programme	Psychosocial support and material assistance for survivors of abuse

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Standing Voice
Report of the Trustees
1st January 2024 - 31st December 2024
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Movement of major funds:

Fund names Fund balances brought forward 1 January 2024 (£) Restricted Incoming resources (£) Restricted outgoing resources (£) Transfers (£) Gains and losses (£) Fund balances carried forward 31 December 2024 (£) Skin Cancer Prevention 16,889 878,187 775,951 - - 119,125 Advocacy and Awareness 50,239 40,629 30,739 - - 60,128 Vision and Education -3,593 120,363 113,653 - - 3,117 Umoja Children’s Centre 138,091 21,250 13,942 - - 145,399 Welfare & Livelihoods services 55,871 91,707 121,782 - - 25,796 Core Costs 227,162 168,384 145,677 - - 249,869 Total Restricted Funds 484,659 1,320,521 1,201,744 - - 603,434	Fund names Fund balances brought forward 1 January 2024 (£) Restricted Incoming resources (£) Restricted outgoing resources (£) Transfers (£) Gains and losses (£) Fund balances carried forward 31 December 2024 (£) Skin Cancer Prevention 16,889 878,187 775,951 - - 119,125 Advocacy and Awareness 50,239 40,629 30,739 - - 60,128 Vision and Education -3,593 120,363 113,653 - - 3,117 Umoja Children’s Centre 138,091 21,250 13,942 - - 145,399 Welfare & Livelihoods services 55,871 91,707 121,782 - - 25,796 Core Costs 227,162 168,384 145,677 - - 249,869 Total Restricted Funds 484,659 1,320,521 1,201,744 - - 603,434	Fund names Fund balances brought forward 1 January 2024 (£) Restricted Incoming resources (£) Restricted outgoing resources (£) Transfers (£) Gains and losses (£) Fund balances carried forward 31 December 2024 (£) Skin Cancer Prevention 16,889 878,187 775,951 - - 119,125 Advocacy and Awareness 50,239 40,629 30,739 - - 60,128 Vision and Education -3,593 120,363 113,653 - - 3,117 Umoja Children’s Centre 138,091 21,250 13,942 - - 145,399 Welfare & Livelihoods services 55,871 91,707 121,782 - - 25,796 Core Costs 227,162 168,384 145,677 - - 249,869 Total Restricted Funds 484,659 1,320,521 1,201,744 - - 603,434	Fund names Fund balances brought forward 1 January 2024 (£) Restricted Incoming resources (£) Restricted outgoing resources (£) Transfers (£) Gains and losses (£) Fund balances carried forward 31 December 2024 (£) Skin Cancer Prevention 16,889 878,187 775,951 - - 119,125 Advocacy and Awareness 50,239 40,629 30,739 - - 60,128 Vision and Education -3,593 120,363 113,653 - - 3,117 Umoja Children’s Centre 138,091 21,250 13,942 - - 145,399 Welfare & Livelihoods services 55,871 91,707 121,782 - - 25,796 Core Costs 227,162 168,384 145,677 - - 249,869 Total Restricted Funds 484,659 1,320,521 1,201,744 - - 603,434	Fund names Fund balances brought forward 1 January 2024 (£) Restricted Incoming resources (£) Restricted outgoing resources (£) Transfers (£) Gains and losses (£) Fund balances carried forward 31 December 2024 (£) Skin Cancer Prevention 16,889 878,187 775,951 - - 119,125 Advocacy and Awareness 50,239 40,629 30,739 - - 60,128 Vision and Education -3,593 120,363 113,653 - - 3,117 Umoja Children’s Centre 138,091 21,250 13,942 - - 145,399 Welfare & Livelihoods services 55,871 91,707 121,782 - - 25,796 Core Costs 227,162 168,384 145,677 - - 249,869 Total Restricted Funds 484,659 1,320,521 1,201,744 - - 603,434	Fund names Fund balances brought forward 1 January 2024 (£) Restricted Incoming resources (£) Restricted outgoing resources (£) Transfers (£) Gains and losses (£) Fund balances carried forward 31 December 2024 (£) Skin Cancer Prevention 16,889 878,187 775,951 - - 119,125 Advocacy and Awareness 50,239 40,629 30,739 - - 60,128 Vision and Education -3,593 120,363 113,653 - - 3,117 Umoja Children’s Centre 138,091 21,250 13,942 - - 145,399 Welfare & Livelihoods services 55,871 91,707 121,782 - - 25,796 Core Costs 227,162 168,384 145,677 - - 249,869 Total Restricted Funds 484,659 1,320,521 1,201,744 - - 603,434	Fund names Fund balances brought forward 1 January 2024 (£) Restricted Incoming resources (£) Restricted outgoing resources (£) Transfers (£) Gains and losses (£) Fund balances carried forward 31 December 2024 (£) Skin Cancer Prevention 16,889 878,187 775,951 - - 119,125 Advocacy and Awareness 50,239 40,629 30,739 - - 60,128 Vision and Education -3,593 120,363 113,653 - - 3,117 Umoja Children’s Centre 138,091 21,250 13,942 - - 145,399 Welfare & Livelihoods services 55,871 91,707 121,782 - - 25,796 Core Costs 227,162 168,384 145,677 - - 249,869 Total Restricted Funds 484,659 1,320,521 1,201,744 - - 603,434
	16,889 50,239 -3,593 138,091 55,871 227,162	878,187 40,629 120,363 21,250 91,707 168,384 1,320,521	775,951 30,739 113,653 13,942 121,782 145,677 1,201,744			119,125 60,128 3,117 145,399 25,796 249,869 603,434
Total Restricted Funds	484,659			-	-

9. DETAILS OF CERTAIN ITEMS OF EXPENDITURE

Fees for examination of the accounts 2024 (£) 2023 (£)	Fees for examination of the accounts 2024 (£) 2023 (£)	Fees for examination of the accounts 2024 (£) 2023 (£)
Auditor’s fees for reporting on the accounts Other fees (for example: advice, consultancy, accountancy services) paid to the independent examiner or auditor	13,380 1,600	12,840 1,950

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

Support costs:

Support Costs Type Fundraising activity (£) Charitable Activity (£) Governance Activity (£) Total Cost (£) Building costs 6,759 27,038 - 33,797 Communications 1,395 5,581 - 6,976 Legal & professional 739 2,954 - 3,693 Other costs 423 1,691 - 2,114 Financial costs 145 580 - 724 Depreciation 2,778 11,112 - 13,890 Total amount (£) 12,239 48,955 - 61,194 ~~_____~~
10. GRANT-MAKING
Grants to individuals/institutions Purpose for which grants made 31 Dec 2024 Total amount (£) Beyond Suncare 17,246 Youth Net and Counselling (YONECO) 30,201 Total amount (£) 47,447 ~~—~~
There were no support costs associated with the charity’s grant-making.
11. STAFF COSTS
Staff costs Unrestricted Restricted 2024 (£) 2023 (£) Gross wages, salaries and benefits in kind 40,685.97 162,743.88 203,429.85 165,357.00 Employer’s National Insurance costs 3,422.19 13,688.77 17,110.96 17,275.00 Pension costs 954.38 3,817.51 4,771.89 3,863.00 Total staff costs 45,062.54 180,250.16 225,312.70 186,495.00 ~~CTT~~

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

Average number of full-time equivalent employees in the year 2024 2023 The parts of the charity in which the employees work: Fundraising 1 2 Charitable activities 3 3 Governance 1 1	Average number of full-time equivalent employees in the year 2024 2023 The parts of the charity in which the employees work: Fundraising 1 2 Charitable activities 3 3 Governance 1 1	Average number of full-time equivalent employees in the year 2024 2023 The parts of the charity in which the employees work: Fundraising 1 2 Charitable activities 3 3 Governance 1 1
Total	6	6

12. TRANSACTIONS WITH RELATED PARTIES

		Amounts paid or benefit value	Amounts paid or benefit value
Name of trustee or connected party	Legal authority (e.g. order, governing document)	2024 (£)	2023 (£)
Harry Freeland	Governing document	65,000	56,667
	Expenditure related to role as Executive	12,458	-
	Director

There are no amounts owing to or from the charity’s trustees or other related parties by the charity at the year end. All transactions undertaken by (or on behalf of) the charity in which a trustee or related party has a material interest have been disclosed in the Notes to the Accounts.

Standing Voice Report of the Trustees 1st January 2024 - 31st December 2024

anding Ice

2024-12-31-accounts

2024

FOREWORD

Contents

1. Legal and Administrative Information

2.1 Constitution

2.2 Board of Trustees

2.3 Advisory Board

2.4 Organisational Structure

2.5 Contributions of Volunteers

2.6 Our Purpose and Objectives

3. PRINCIPAL ACTIVITIES

Geographical reach (Dec 2024)

3.2 Demographic Breakdown - all programmes

Patient Demographics: Gender and Age Distribution

Distribution of Registered Patients in Tanzania

4. SKIN CANCER PREVENTION PROGRAMME

4.1 Reach and Growth

4.2 Geographic Breakdown SCPP

4.3 Retention

Mobilisation Strategies and Evaluation

4.4 Screening and Medical Management

Prevalence of Clinical Conditions among Patients Seen (January – December 2024)

Distribution of tumours by body parts in 2024

4.5 Referral Management

Percentage of all registered patients referred for skin cancer surgery since 2017

4.6 Sun Protection Measures

4.7 Educational resources

4.8 Community Knowledge

4.9 Stakeholder Training

5. VISION AND EDUCATION PROGRAMME

5.1 Key Achievements in 2024

Total people with albinism supported:

2,757

Total assistive vision devices distributed: 8,053

Teachers trained: 63

Students reached through seminars and school outreach 21,728

5.2 Impact on Education

5.2.i TEACHER TRAINING

5.3 Training of Optometrists

6. WELFARE AND SOCIAL PROTECTION PROGRAMME

6.1 The Issue

MALAWI

218 human rights violations

Most recent attacks:

18th July, 2024

17th June 2024

TANZANIA

206 human rights violations

6.2 Albinism Helpline

6.3 Advocacy

6.3.i IN FOCUS: National Action Plan on Albinism

6.4 Counselling and Emergency Tailored Support

6.5 Umoja Training Centre: Advancing Inclusion, Education and Opportunity

6.6 Human Rights Training

People with albinism and family members participating in rights-based training: 17,217

Albinism Advocates trained: 261

6.7 Women’s Albinism Action Group: Empowering Women, Confronting Stigma

7. SPECIAL EVENTS

8. DATA MANAGEMENT

9. FUNDING MATTERS ~~ae~~

GRANT-MAKING POLICY

FUNDRAISING ACTIVITIES IN THE UK

FINANCIAL PERFORMANCE

EXPENDITURE SUPPORTING KEY OBJECTIVES

10. GOVERNANCE AND RISK

FUTURE PLANS OF THE CHARITY

RISK

Risk Management

Additional Risks

Cie

RESPONSIBILITIES OF THE BOARD OF TRUSTEES

PUBLIC BENEFIT

TRUSTEES’ DECLARATION

11.1 Independent Auditor’s Report to the Trustees of Standing Voice (UK)

Opinion

Basis for opinion

Conclusions relating to going concern

Other information

Matters on which we are required to report by exception

9. FUNDING MATTERS ae