SICKLE OCIETY Infomi81ion, Counselling and caring forthose ￿th Sickle C811 Disortlets and theirfamilies Charity Reg.- 104 6631 The Sickle Cell Society (A company limited by guarantee) Report and Audited Financial Statements Year Ended 31 March 2025 Company Number 2840865 Charity Number 1046631 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Contents Page: Company information Trustees, report 24 Independent auditor's report 27 statement of financial activities 28 Balance sheet 29 Statement of cashflows 30 Notes forming part of the financial statements The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Patrons: Mr Michael Parker CBE, President Professor Dame Elizabeth Anionwu CBE Baroness Dame Floella Benjamin OBE Rt Hon. Lord Paul Boateng of Akyem Mrs Millicent Simpson Mr Derrick Evans MBE Sir Lenny Henry CBE Sir Clive Lloyd OBE Sir Trevor Phillips OBE Mrs Sherlene Rudder MBE Ms Ellen Thomas Ms Kym Mazelle Mr John Regis MBE Ms Dawn Butler MP Mr Rudolph Walker CBE Rev. Rose Hudson-wilkins MBE Trustees - Dlrectors Ms Michele Salter Dr Matthew Sowemimo Ms Julia McLarty Ms Carol Burt Mr Ganesh Sathyamoorthy Mr Nathan Fordwor-Hepburn Ms Lisett Brown Ms Zainab Garba-sani Dr Kilali Ominu- Evbota Ms Claudette Allerdyce Ms Lanre Ogundimu Chair- To 31 March 2025 Chair- From July 2025 Treasurer Vice Chair Staff Mr John James OBE Ms lyamide Thomas Ms Miriam Williams Ms Olivia Anastasiou Chief Executive NHS Engagement Lead Finance & Administrative Manager Digital Marketing Officer- Blood Donation Helpline & I nformation Officer Helpline & Infofmation Office Parliamentary Officer for SCTAPPG - To December 2024 Fundraising Manager Sickle Cell Children &Young People Mentoring Programme Manager (London) Give Blood Spread Love Manager Communications Manager Communication Officer Sickle Cell & Genomics England Partnership Manager Sickle Cell Children & Young People Mentoring Manager {NW England) From June 2024 Ms Michelle McFarlane Ms Keyah Miller Ms Oluwaseyi Afolabi Ms Sandra Reyes-Hayduk Ms Addassa Follet Ms Sarah Babalola Ms Paula Shutt Ms Rachel Simpson Ms Rashae Peart Ms Adelaide Houlette The Sickle Cell Society Report and financial statement5 for the year ended 31 March 2025 Ms Adefemi Odesanmi Advocacy Link Worker- From July 2024 Fundraising & Database Officer From August 2024 Volunteer Co-ordinator September 2024 Mentor Administrator {NW England) From.. November 2024 Project Manager Race Health Observatory (RHOI Transitions Project- From March 2025 Ms Liana Tinica Ms Rachel Cobham From Mrs Anna Shelmerdine Ms Hannah Sharp The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Registered address Sickle Cell Society, 54 Station Road. London NW10 4UA Telephone number 020 89617795 Website and email address www.sicklecellsociety.org, info sicklecellsocie .or Registered charity number 1046631 Company registration number 2840865 Independent Auditor PKF Littlejohn LLP, 15 Westferry Circus, Canary Wharf, London E14 4HD Banker National Westminster Bank, 520 High Road, Wembley, HA9 7BZ Medical Advisors Dr Nellie Adjaye (Retired) Consultant Community Paediatrician Mid Kent Healthcare NHS Trust Professor Dame Sally Davies Rector Cambridge University Cambridge Professor Mark Layton Consultant Haematologist Hammersmith Hospital, London Professor Bernadette Modell Emeritus Professor, UCL, London Professor David Rees Consultant Haematologist Kings College Hospital, London Dr Allison Streetly Consultant in Public Health Public Health England Rachel Kesse-Adu Consultant Haematologist (Adults) Guys and St Thomas Hospitals Professor Eugene Oteng-Ntim Consultant Obstetrician Guy's and St Thomas, Hospital The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Scientific advisors Dr Mary Petrou Director, Perinatal Centre University London Hospital, London Dr Kofi Anie MBE Consultant Clinical Psychologist NW London Hospitals NHS Trust Dr Elizabeth Dormandy {Retired) Consultant in Public Health Keisha Osmond-Joseph Barking, Havering and Redbridge University Hospitals NHS Trust Giselle Padmore-Payne Division 3 - Childrens Acute Services The Royal Wolverhampton Hospitals NHS Trust The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 The Board of Trustees of the Sickle Cell Society present their annual report and audited financial statements for the financial year ended 31 March 2025 and confirm that they comply with the requirements of the Companies Act 2006, the Charities Act 2011, as well as the Society's Memorandum of Association (Constitution), and the Accounting and Reporting by Charities.. Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard 102 applicable in the UK and Republic of Ireland {FRS 1021. These statements relate to the funds of the Society, its core activities, stakeholders, engagement and collaboration in research and development. SUMMARY REVIEW OF 2024125 A Year of Challenges, Change and Communlty Strength This year has brought both significant highs and challenging lows for the sickle cell community, shaped by major shifts in treatment access, increased public visibility, and powerful collective advocacy. At the same time, as a charity, we have tsken an inward look at our strategy and systems to ensure we are fit for the future and resilient in a rapidly changing healthcare landscape. We undertook a period of reflection, working as a Board and with our staff team to explore where our strategic priorities lie. As demand for our expertise continues to grow, we recognise the importance of refining our direction to ensure that our future stralegy refiects the needs of the sickle cell community, align5 with our charitable aims, and responds to the evolving external environment. Toward the end of this reporting period, the Prime Minister announced plans to abolish NHS England, with its functions to be absorbed into the Department of Health and Social Care over a two-year period. The changes aim to reduce bureaucracy and redirect funding toward frontline services. Integrated Care Boards IICBS) have also been asked to cut their budgets by 50 %, and a public consultation on the NHS'S 10-year plan is currently underway-signalling a period of far-reaching reform across the health system. This announcement has understandably raised concerns at the Society. NHS England is a key partner in funding and shaping some of our programmes, and lead the wide-ranging sickle cell care transformation programme. These changes require us to make broader considerations as we develop our strategic plans, ensuring we remain agile and well-positioned to influence policy and protect progress made in sickle cell care. In reality, we are busier than ever-and more determined than ever-to ensure sickle cell remains high on the healthcare policy agenda in the UK. Internally, we made important investments to strengthen our systems. We introduced a new CRM system, improving how we manage data, enhancing our compliance with data protection regulations, and supporting staff in their day-to-day work. This investment will enable us to better manage the growing number of people we support, collaborate with, and engage through our programmes. Looking ahead to the next financial year, we will focus further on our technology infrastructure-reducing the disruptions we've faced in recent years and ensuring our systems are strong and reliable enough to carry us forward, especially as we approach 50 years as a charitable organisation later this decade. We have also made progress in improving the systems that underpin our volunteer programme. Our dedicated and enthusiastic volunteers support a wide range of activities, and we have focused on building The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 better tools to recruit, retain, and support them. Our goal is to provide meaningful and rewarding experiences that reflect the vital contribution they make. As our impact has grown, so too has the need to expand our staff team to meet the needs of new areas of work. This includes improving healthcare outcomes for young people transitioning from paediatric to adult services, supporting people with complex welfare and benefits needs, and advocating for those living with sickle cell in the prison system. These are critical areas where our expertise and compassion can make a real difference. Our work in the community has continued to have a strong impact. We attended 59 blood donation events this year to encourage more donors from Black heritage communities, helping to improve blood matching for people with sickle cell. The majority took place in London, the area of highest prevalence of sickle cell, with others held across the UK and online. helping us reach a wider audience and grow awareness nationally. We've seen the case for structured peer support for children and young people strengthen, with 300 referrals in London during the reporting period. We were delighted to progress work to extend the peer support programme to Sheffield, Liverpool and Manchester and widen access to this proven programme for young people with sickle cell across south Yorkshire and the North West. The programme was broughtto life through a powerful video released in January 2025, helping to showcase positive role models for young people. We were delighted to bring 100 people together for a summer weekend family retreat in Shropshire, made up of 27 family units, each with at least one child living with sickle cell. The retreat was once again a great success, with both parents and children highlighting the joy, sense of community, and valuable connections formed with others facing similar experiences. Many reported long-lasting benefits to their wellbeing and support networks as a result. In September 2024, we were dismayed by Pfizer's sudden global withdrawal of Voxelotor IOXBRYTA@) a move that followed the earlier loss of the new Novartis drug, Crizanlizumab, leaving patients with even fewer options for safe and effective sickle cell treatments. Our public statement on 26 September captured the frustration felt by the community, as decades of progress in trealment innovation were effectively erased in just a few months. The lack of clarity on the decision further deepened feelings of mistrust and vulnerability in the community. There was hope in the form of the Vertex treatment, Casgevy (Exa-cel), a potential breakthrough gene therapy, as it progressed through the NICE appraisal process. We remained engaged throughout, with a final committee meeting held on 10 October 2024, and a landmark approval decision announced on 31 January 2025. The announcement dominated national media, with extensive coverage across print, online, and TV platforms throughout the day-a vital moment in placing sickle cell in the national conversation. The news was welcomed enthusiastically across the sickle cell community by patients, community advocates and health professionals alike. We launched a collaborative project with Genomics England and the James Lind Alliance (JLA) to develop a Priority Setting Partnership {PSPI focused on sickle cell genomics. This initiative brings together patients, carers, and clinicians to identify and prioritise the most important unanswered questions for future research. The project aims to deepen understanding of the role of genomics in sickle cell and explore how genomic research can lead to improved outcomes for those affected by the condition. Our growing reputation as a centre of excellence in sickle cell advocacy. campaigning and community-led action continued to attract global interest. In August 2024. we were pleased to welcome Dr Staci D. Arnold The Sickle Cell Society Report and financial staternents for the year ended 31 March 2025 Paediatric Haematologist, Co-Director of the Curative Therapies for SCD Program at Children's Healthcare of Atlanta, and Associate Professor of Paediatrics at Emory University School of Medicine. DLiring her visit to our offices, Dr Arnold engaged deeply with our work and approach to emerging therapies. She expressed enthusiasm for incorporating insights from our model into her own practice in the United States. As well as having a presence at influential international events and COnferen￿S, we continued our work as a member of the Sickle Cell Disease Coalition based in the USA. The Coalition brings together global stakeholders to advance research, increase awareness, promote access to high-quality care, and accelerate the development of new therapies. We contributed a UK perspective and helped to ensure that the voices of people living with sickle cell are represented in shaping international priorities. In the UK, we joined the new Sickle Cell Alliance, working with NHS and academic partners to drive innovation and investment in sickle cell research. The Alliance combines the expertise of clinicians. researchers, educators and patient advocates to enhance research, funding, and patient support for the global sickle cell community. It has been a full and rewarding 12 months. Fittingly, the reporting year began with a moment of recognition, as our CEO John James was named in Sanius Health's global list of the most influential people in sickle cell. Over the summer, our visibility conlinued to grow through impactful projects, collaborations, and extensive coverage surrounding developments in gene therapy and the launch ofa sickle cell related drama series. This increased public profile adds to what we've built over the past 46 years. Through sustained effort, we have gained access to centres of power and influence and built a strong profile and reputation -and with the addition of new highs in visibility has come a year full of opportunities to speak up, show up, and do more for people and families living with sickle cell. We are proud ofall that's been achieved-and energised for what comes next. Dr Matthew Sowemimo Chair John James OBE Chief Executive Leadership news In late 2024, we heard that the Chair of our Board of Trustees, Michele Salter, would be stepping down from her role in the spring of 2025 after 11 years of dedicated service. Michele was an excellent leader, offering invaluable guidance and support during her time on the Board. Under her stewardship, the charity has grown, our finances have been transformed, and through effective strategic leadership., our impact in the sickle cell community has increased. Her contributions have left a lasting legacy that will continue to benefit the Society and those we serve. While we were sad to see Michele step down, we focussed on ensuring that the transition would pave the way for new ideas and fresh perspectives to fvrther our mission, and honour the progress that Michele has made. The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 The Board of The Sickle Cell Society OUR ROLE AND ORGANISATION About sickle cell disorder Sickle Cell Disorder (SCD) is an inherited blood condition that affects red blood cells, which are responsible for carrying oxygen from the lungs throughout the body. In individuals with SCD, the normally round and f5exible red blood cells take on a crescent or sickle shape. These abnormally shaped cells are rigid, sticky, and prone to breaking easily, leading to anaemia. They also tend to clump together, blocking blood vessels and causing severe pain known as a "sickle cell crisis., These crises can last from a few hours to several weeks and often require hospitslisation for treatment with potent painkillers, although milder crises can sometimes be managed at home. Over time, people with SCD may suffer from organ damage, affecting the liver, kidneys, lungs, heart, and spleen. These complications often lead to disabilities. Bone marrow transplants are a curative option, but they come with significant risks and complications and are not a simple cure. Sickle Cell Disorder is one of the most common genetic conditions both in the UK and globally. In England, 1 in 77 babies tested is found to be a carrier of the sickle cell trait. Despite advances in NHS specialised services and clinical care, there remain significant challenges in service support, awareness, and understanding of the condition. This has been highlighted by peer reviews of NHS Sickle Cell Services and the Sickle Cell and Thalassaemia All-Party Parliamentary Group's report, "No One's Listening published in November 2021. England has a national antenatal and newborn screening programme for sickle cell disorder. All pregnant women are offered screening to determine if they carry the gene for SCD, with subsequent screening offered to the baby's father if the mother is a carrier. These screenings can present complex and difficult choices for parents, especially when there is a lack of understanding about the condition among both parents and healthcare professionals. Additionally, all newborn babies are tested for the sickle cell gene to ensure early diagnosis and management. OUR CORPORATE STATUS The Sickle Cell Society was ft)unded in 1979 by a group of healthcare professionals, individuals and families affected by sickle cell disorder. The Society was later established under a Memorandum ofAssociation with the objects and powers ofa charitable company and has been governed under those Articles ofAssociation, since 1993. Under those Articles, the Society is limited by guarantee not having a share capital. Each member of the Society is liable to contribute £1 towards the liabilities of the Society in the event of liquidation. Our charity registration number is 1046631 and the company registration number is 2840865. Our Head Office is located at 54 Station Road, London, NW10 4UA. The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 OUR MISSION, AIMS AND OBJECTIVES Charity objectives Our charitable purposes as set out in the objects contained in the Charity's Memorandum of Association are.. To provide relief for persons with sickle cell disorders. The relief of poverty among members of the immediate family of persons who are suffering or who, immediately before their death, suffered from sickle cell disorders. The provision of recreational activities for affected individuals and their families. The improvement of public information, assisting in research into the causes, treatment of the condition and dissemination of such information. The aims of the Charity are to assist and enable people with sickle cell disorder to realise their full potential. In order to achieve this, the Society's resources are used to undertake the following activities.. 1. Annual Children's holidaylFamily Retreat and children's activitie5. 2. Health Education and I nformation services including.. Leaflets, exhibitions, books, audio visual materials. conferences, seminars. workshops and partnership networking Website, e-mail newsletters, social media and communication activities Patient and carer education days Telephone helpline and information advice 3. Collaborating on medical and non-medical research on sickle cell with a wide range of stakeholders. 4. Assisting to influence statutory policy and programmes of the government, such as NHS Screening Programmes, National Institute for Health and Care Excellence (NICE) developments and work of the All Party Parliamentary Group {APPG) for Sickle Cell and Thalassaemia. 5. Developing strategic collaborations and partnerships both nationally and internationally. How our activitles deliver public benefit The Trustees have given due consideration to the Charity Commission's published guidance on the operation of the public benefit requirements. The TrLSStees are satisfied that the Society's aims outlined above continue to be met and satisfy the public benefit test by virtue of taking action to help people with sickle cell disorder and their families. How we are organised The Memorandum of Association, as amended in 2013, allows a maximum of 10 individuals from the membership and externally, to be selected on to the Board ofTrustees each year, to serve for up to 3 years. The Trustees of the Society are also the Directors ofthe Charity. In addition, a pool ofAdvisors and Patrons selected by the Board for their individual professional and community standing, strategically support the Trustees, volunteers and staff. The Board meets monthly and sub-committees and ad-hoc working groups complement meetings. The Chief Executive heads a small team of paid staff in addition to a pool of volunteers and is responsible with the Trustees for the strategic direction and for the day-t¢)-day operational activities of the organisation. The Chief Executive reports to the Chair of the Board. The policy for setting the pay and remuneration of the Chief Executive and employees is set by the Board and benchmarked to equivalent sized charities. The Sickle Cell Society Report and financial statements for the year ended 31 March 202S Board development The Board of 10 Trustees has 2 members with sickle cell disorder and 4 Trustees are also carers for family members with sickle cell. The Board undertook board development training during 202412025. All new trustee appointments are open to members and non- members of the Society. All trustee recruitment is by advertisement and application. An interview panel organised by the Chair interviews all shortlisted applicants. All new trustees undergo an induction programme including meetings with the Chair and Chief Executive. New Trustees are also provided with Charity Commission guidance and information for trustees together with a copy of the Nolan principles and code of conduct. KEY HIGHLIGHTS FROM THE YEAR 202412025 Stakeholder relationships Over the past year, we have partnered and collaborated with a wide range of organisations across the voluntary, statutory, clinical. and commercial sectors to progress sickle cell care, raise awareness and extend the reach of our work. These partnerships have been central to delivering education, improving care pathways, and influencing health policy. We continued our close work with NHS England, NHS Blood and Transplant, the UK Thalassaemia Society, Genomics England, and the NHS Sickle Cell and Thalassaemia Screening Programme. Our participation in the UK Forum on Haemoglobinopathies and collaborations with the MHRA, and the UK Health Security Agency {UKHSAI allowed us to contribute to delivering information and advice about health and regulatory processes. We also supported hospital sickle cell service patient reviews, ensuring that patient voice and lived experience remain embedded in service delivery. We've also forged valuable relationships beyond the clinical sector, including with the NHS Race and Health Observatory {RHOI, the National Council for Voluntary Organisations INCVO), and the Sickle Cell and Thalassaemia Association of Counsellors {STAC). Our media and cultural collaborations included projects with Harpercollins Publishers, Netflix, Theatre Peckham, University of Westminster, Black Minds Matter, and awareness campaigns such as the"Do with. campaign, and the .1 Am Number 1T' campaign. We joined with several organisations across industry, the health and charity sectors to submit a joint response to the NHS 10-Year Plan consultation. We engaged with His Majesty's Prison Service to support people with sickle cell in custody and partnered with the Anthony Nolan Trust on new treatment advocacy work. In everything we do, we remain committed to working alongside community groups, individuals, and industry stakeholders to ensure that people living with sickle cell are seen, heard, and supported at every level. Membership & Support Group Base We have maintained our free membership policy, and as of FY 2024125, our membership has grown to 2,990 members, up from 2,344 in 2023124. New members continue to join us through our website, social media, and in-person events. This year, we began migrating to a new CRM system, Beacon, to help us better organise and manage our data, strengthen compliance, and support more effective engagement with our community. As a result of the data cleaning done during the migration, the figure of 3,005 previously quoted for the financial year 2023-24 has been reviewed and revised to 2.344. 10 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 We also began work on a full website refresh, with plans to improve user experience and make a stronger case forjoining as a member as part of our wider content review. While the timing of newsletters varied this year, these developments are laying the foundations for more consistent, streamlined communications. As the national umbrella organisation for over 40 support groups, voluntary organisations, and statutory centres across the UK, we are proud to maintain an active and engaged support base across all our channels. Media & Communlcation We used a range of platforms to raise awareness, amplify lived experience and the patient voice, share information and education, and support the Society's projects and advocacy activities. At the ASCAT conference in October, we presented on the power ofstorytelling through our newly launched podcast episode focused on transition from paediatric to adult care. The episode explored how young people, families, and clinicians can better navigate this critical period. Our presentation was well received by the international audience of clinicians, healthcare professionals, and industry leaders, reinforcing the value of patient voice in service development and support. Building on that momentum, we released a ￿0-part podcast series exploring fertility, family planning, dating, and relationships-topics that are often underrepresented in the sickle cell conversation. The episodes featured insights from a leading consultant obstetrician specialising in sickle cell care, alongside an honest and compelling discussion with a panel of young adults sharing their lived experiences. These conversations tackled sensitive issues with openness and depth, offering valuable perspectives and guidance for both patients and healthcare professionals. One of our biggest communication challenges remains that of reaching audiences beyond the core sickle cell community. However, this year saw real progress. In January 2025, we were featured in Superdrug's national magazine, with a mother and daughter sharing their story helping bring sickle cell into mainstream health conversations and widen awareness. In the spring of 2024, we collaborated with the biggest streaming platform, Netflix, on communications activities for Supacell, their new superhero drama which centred around a sickle cell storyline. The show was written by Andrew Onwubolu MBE, better known by his stage name, Rapman, a British rapper, record producer, screenwriter, and film director from South London. The show went to number one in the Nefflix charts worldwide with 7.1 million views in early July. It also hit nLimber one in multiple countries and held a top 10 spot for six weeks. Combined with the intense media interest stemming from the gene therapy approval process, this visibility sparked a major surge in online conversations about sickle cell. We worked with NHS England on the ACT NOW acronym campaign-a tool for A&E and ambulance staff to respond rapidly to patients in sickle cell crisis. The acronym was developed in response to the No One's Listening report, and formed part of NHS England's Sickle Cell Improvement Programme. The national rollout began in the spring of 2024. Initial feedback from patients and clinicians show signs that the acronym is working to support patients while they aC￿sS non specialist emergency care. We were pleased to collaborate with Harpercollins Publishers on The Secret Diary of Joynina K. Jones a new book written from the perspective of a 13-year-old girl living with sickle cell. Told in a diary format, the story explores how the main character navigates hospitsl stays, school life, and relationships with family and friends, offering a relatable and heartfelt window into life with the condition. Published under the Collins Big Cat imprint, the book will be distributed to schools. helping to raise awareness of sickle cell among young readers and educators, and bringing vital insights into classrooms across the UK. The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Our social media platforms continue to play a vital role in raising awareness, sharing key information, and connecting with our community. This year, we reviewed our platform strategy in light of changing trends across the digital landscape. With a noticeable decline in the popularity and reliability of X (formerly Twitter), we made the decision to join Bluesky as we monitor developments and assess the best channels for meaningful engagement. Aside from X, each platform has continued to see steady growth across the year. TikTok has emerged as a growing area of opportunity, particularly for reaching younger audiences. We've seen steady growth on the platform, with strong engagement on posts that highlight lived experience, blood donation, and health information in relatable and creative ways. Instagram and Facebook remain important channels for community conversation, while Linkedln continues to support our professional visibility, helping us connect with health sector stakeholders and partners. Our content throughout the year featured campaign collabofations and public health messaging, including work with NHS Blood and Transplant on blood genotyping, with Nefflix on Supacell, with Theatre Peckham for a special Young, Gifted and Black season event, and visibility for the l Am Number 17 campaign to raise awareness of rare genetic conditions - to name a few. As we move forward, we aim to invest more in creative content development, storytelling, and education pieces ensuring that our platforms remain a trusted and engaging source of information for people affected by sickle cell. Our website continues to attract visitors from across the globe, reflecting our strong international presence and reputation as a Irusted source of information on sickle cell disorder. Throughout the year, we saw clear spikes in traffic around key moments-including World Sickle Cell Day 2024, the release of the Netflix series Supacell, and major developments in access to sickle cell treatments. These peaks demonstrate how our website remains a go-to destination during times of high public interest. Recognising the importance of accessibility and user experience, we have begun work on a full website refresh. The redesigned site is set to launch in the next reporting period and will strengthen how we engage with the sickle cell community, support professionals, and raise awareness both in the UK and internationally. Helpline and Information Service Our advice line remains a vitsl source of support for people living with sickle cell and their families. Throughout the year, we provided people with tailored advice and advocacy during 279 phone calls and 1,000 emails. The team responded to a wide range of enquiries covering health, education, social care, housing, welfare benefits, and more. The most common queries were around sickle cell treatments, SCD research, requests for our resources, financial matters, donations, and requests for the charity to attend exhibitions and send speakers to events. We also offered guidance to professionals in schools, healthcare settings, and other organisations seeking to better support individuals with sickle cell. The strength of our advice service lies in the depth of knowledge and lived experience held across our staff team, supported by input from our panel of expert medical advisers and trusted partners. This collective expertise not only informs the advice line, but also underpins our online resources, face-to-face community engagement, and consultancy work with larger organisations. Our advice team continues to be active in the community, regularly attending events, hosting stalls, and sharing accessible information. These in-person opportunities are invaluable for connecting directly with. 12 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 people affected by sickle cell, gathering feedback, and helping shape how we deliver support-ensuring that our services remain responsive to the real-world needs of those we serve. Educationlinformation and awareness On June 19, 2024, we marked World Sickle Cell Day under the theme "We Are Stronger Together'_ powerful reminder that collective action and community solidarity are essential to improving sickle cell care. Our campaign spotlighted the strength that emerges when patients, families, healthcare professionals, and advocates unite to challenge under-investment. narrow health disparities, and push for better services. As part of the day's activity, we launched a new podcast, with a compelling transition-focused episode, featuring discussions between young people, clinicians, and a clinical psychologist, about the challenges of moving from paediatric to adult care. The conversation highlighted the power of storytelling and peer support in improving outcomes. We also shared some powerful spoken word clips from staff members. reflecting on the theme, and what it meant to them personally and professionally. These short, thoughtful pieces brought some additional storytelling to the day, amplifying voices from within the organisation and reinforcing our collective commitment to the sickle cell community- We saw a clear spike in engagement across our social media channels and website, driven by the day's powerful messaging. Importantly, we were able to carry that momentum into the summer, building on the increased visibility through strategic collaborations and compelling content-ensuring sickle cell remained part of the national conversation well beyond a single awareness day. Sickle Cell and Thalassaemla Screenlng Programme In October 2024, we began the second year ofour collaboration with the UK Thalassaemia Society (UKTS), working in partnership with the NHS Sickle Cell and Thalassaemia Screening Programme. This project continues to ensure that the screening pathway is shaped by service user needs and focused on tackling health inequalities. However, the planned third year of this work is now uncertain, given the wider restructuring of NHS England and its potential impact on future programme funding. A key focus this year was follow-up activity from our landmark report.. It's in Our Genes.. Service User Experiences and Feedback on the Communication of Screening Results for Sickle Cell and Tlpalassaemia. This report explores the lived experiences of individuals and families receiving screening results for sickle cell and thalassaemia through the NHS antenatal and newborn screening pathways. It highlights significant gaps in how results are communicated-particularly the lack of empathy. cultural understanding, and clear information provided to families at that crucial time. The findings were drawn from detailed feedback from service users, revealing that many felt unprepared, unsUPPOrted, or confused by the way results were delivered. In response, the report makes several recommendations to improve communication practices, including better staff training, consistent messaging, and more person-centred approaches. This year our work included a highly successful online learning session, attended by 127 healthcare professionals. Feedback highlighted how impactful it was to hear directly from parents, with one antenatal and postnatal screening midwife noting how it would directly improve their practice. The It's in Our Genes findings were also showcased at two major events through poster presentations- first at the London Maternity and Midwifery Festival in Bath, and then at the international Academyfor Sickle 13 The Sickle Cell Society Report and financial statetnents for the year ended 31 March 2025 Cell and Thalassaemia {ASCAT) conference in London. Each event drew over 300 attendees. A video podcast version of the poster was also produced and shared to extend the reach of the findings further. Throughout the year, we also delivered eight educational talks, hosted three information stalls, and ran an online webinar-primarily aimed at midwives and health visitors involved in communicating screening results. Combined, these activities are estimated to have reached more than 500 professionals, helping raise awareness and improve understanding of screening and its importance in sickle cell care. Looking ahead, we are planning a joint podcast with UFffS and the NHS Screening Programme, a national conference on communicating screening results, and the launch of a new preconception testing leaflet further building on the momentum and learning from this year's achievements. Family Retreat 2024 In August 2024, we welcomed 27 families to our Family Retreat at Whitemoor Lakes in Staffordshire. With 100 participants including children with sickle cell, their siblings, and parents - the retreat provided a much- needed break and a space for fun, adventure activities, education, and peer connection in a safe, inclusive setting. Designed for families with at least one child living with sickle cell, the retreat saw overwhelming demand, with more than 100 families applying for under 30 places. Families were prioritised based on need, enabling us lo include several vulnerable households, including some new to the UK or affected by housing insecurity. The retreat offered a rich mix of activities designed to support the whole family-building confidence, improving understanding of sickle cell, and encouraging new friendships. The programme included high- energy activities like abseiling and ziplining, along with wellbeing workshops, sibling support sessions, and dedicated sickle cell education for children and parents. Separate sessions were also held for parents, siblings, and young people, ensuring tailored support across the group. We were thrilled to bejoined by our long-standing friends at Miffy, the iconic rabbit character from children's storybooks, enjoyed by generations. The Miffy character visit brought an extra touch of magic for the younger children. Miffy's generous contribution of goody bags, along with additional kind support from Pass the Bricks (who provided LEGO), added to the sense of fun and celebration throughout the weekend. The retreat proved to be a transformative experience. Families told us it was the first time they felt truly understood, and they made meaningful new friendships. They also shared that their children left with renewed energy and confi'dence-which was particularly important ahead of the new school year. One child described it best: "We were like a big family. Notably, 100 % of families said they'd like to attend again, and children ovetwhelmingly reported having fun. learning new things about sickle celk-and about themselves. This was our second Family Retreat and it is very clear that this model works. We made some improvements- including making available some separate activities for children and parents, and providing a professional creche, so that even the youngest attendees could be supported, allowing parents time to connect and participate in focused discussions. These changes provided a better overall experience for families. The retreat also provided an opportunity for volunteers and professionals to connect and support one another, building a community that extends beyond the weekend. 14 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 The retreat offers emotional, educational. and social support that families tell us is otherwise hard to find. We look forward to building on its success and continuing to offer spaces that inform, empower, and bring people together. Parliamentary & policy work . The Sickle Cell & Thalassemia APPG Engaging with parliamentarians remains a vital part of our advocacy work. However, changes introduced in summer 2024 to the rules governing All-Party Parliamentary Groups {APPGsJ have made it increasingly difficult and competitive to secure MPS to support new or continuing groups. As a result, we were unable to reconvene the Sickle Cell APPG following the general election. We are actively working to re-e5tablish the group and are in ongoing conversations with potential parliamentary champions, aiming to relaunch the APPG as early as possible in the next parliamentary session. We have continued to engage with parliamentarians and advocate for policy change through other means. In April, we represented the sickle cell community at a special event in the Houses of Parliament for the I Am Number 77 campaign-an initiative highlighting the stories of individuals affected by rare genetic conditions, of which sickle cell is one of the most common in the UK. The campaign challenges stigma and promotes greater awareness and equity in care for people with rare conditions. At the event, we met with MPS to emphasise the ongoing inequalities faced by people living with sickle cell and to explore how they could support change in their constituencies and in Parliament. While we work to re-establish the APPG in the future, this kind of direct engagement ensures that sickle cell remains on the political agenda and that we continue to amplify the voices of our community in policy spaces. Glve Blood, Spread Love, England Our Give Blood, Spread Love campaign continued to make a powerful impact this year, reaching over 30,000 people across 59 events aimed at increasing awareness and participation in blood donation within Black and Brown communities. This work is vital to improving the supply of well-matched blood for people living with sickle cell, many of whom require regular transfusions to prevent life-threatening complications. Thanks to these efforts, we secured enough new donor sign-ups to potentially save or improve the lives of up to 1,800 adults or 3,600 children with sickle cell-a truly life-changing outcome. A key part of this outreach included the Unite for Sickle Cell student programme, which engaged university communities in cities including Manchester, London, Bristol, and Birmingham. The programme focused on building awareness, creating donor networks. and connecting students with the cause through wellness events, creative sessions exploring lived experiences, and NHSBT-supported donor registration drives. Activities ranged from yoga and nutrition talks to storytelling and physical fitness sessions all tied back to the central message of creating a healthier, better-informed donor community. This grassroots engagement is helping to build a new generation of regular donors, equipped with the knowledge and motivation to support people with sickle cell for years to come. Children and Young People Peer Mentoring Our Children and Young People's Peer Mentoring Programme continues to provide essential, structured support for young people living with sickle cell. This year saw significant growth in reach and impact, with over 300 referrals in the London area -a clear reflection of rising demand for peer-led, condition-specific mentoring. 15 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 To meet this need, we successfully expanded our mentor pool. improving our capacity to match mentees more quickly and provide timely, high-quality support. Feedback from participants showed encouraging outcomes, including improved confidence, emotional resilience, and overall wellbeing. Key highlights included national coverage on ITV News, which raised awareness of the challenges young people with sickle cell face and spotlighted the programme's value. We also launched a dedicated mentoring promotional video, helping to boost visibility and inspire more young people to get involved. Our Future Focus sessions-designed to support mentees as they explore university, apprenticeships, and life beyond school-offered practical guidance and broadened the scope of support we provide. Despite increased pressure on services, the programme has continued to deliver powerful, life-changing outcomes. Looking ahead, we aim to grow our mentor recruitment and training offer, strengthen transitions for young people completing the programme, and further embed Patient and Public Involvement and Engagement (PPlE)-ensuring that young voices are not only heard but shape the future of sickle cell support services. During the year, we also focused on expanding the Peer Mentoring Programme into Liverpool, Manchester, and Sheffield, extending our reach to young people with sickle cell across the North West and South Yorkshire. We've worked hard to build relationships and gain engagement from clinical teams in these regions essential groundwork for establishing local pathways into the service. Vvhile the expansion has not been without its challenges, we are pleased to report that mentor recruitment has been successful, and referrals have begun to come through. We are committed to building on this early progress, strengthening regional links, and ensuring that young people living with sickle cell in these areas have access to the same high- quality, peer-led support as those in other parts of the country. Volunteer Programme This year, we re-launched and strengthened our volunteer programme, with a renewed focus on creating meaningful opportunities that reflect the talents, lived experience, and dedication of our supporters. Volunteer involvement remains vital to our work-helping to extend our reach, raise awareness, and champion the voices of those living with sickle cell. We recruited 11 new volunteers this year, bringing our total to 53 active volunteers across the organisation. From supporting fundraising events to representing the Society at outreach days, talks, and awareness campaigns, our volunteers continue to play a crucial role in building community connections and delivering impact on the ground. Our approach this year has centred on aligning volunteering opportunities with individual skills and experience, while ensuring volunteers feel valued and empowered. We've seen inspiring contributions- from organising health and wellbeing events at HMP Send, to supporting awareness activities at the University of Nottingham and A2ndVoice's Autism Cultural Experience Fayre. As we continue to roll out our refreshed volunteering programme, we remain committed to nurturing this growing network and building a stronger, more inclusive volunteer community. 16 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Sickle Cell Genomics Research Priorities Project In partnership with Genomics England and the James Lind Alliance, we created a Priority Setting Partnership {PSP) to identify the lop unanswered research questions for sickle cell disorder, with a particular focus on the role of genomics. The Priority Setting Partnership is a vital step in ensuring that research into sickle cell disorder is shaped by the voices of those most affected. For too long, people living with sickle cell have been underrepresented in medical research, with limited influence over the questions being asked or the direction of innovation. This project puts patients, carers, and clinicians at the centre of the conversation identifying the research priorities that matter most to them. By focusing on what people actually want to know, and what COLild genuinely improve care, quality of lrfe, and future treatments, we can help ensure that new developments in genomics are relevant, equitable and impactful. As the landscape of genetic therapies continues to evolve, it's crucial that sickle Cell communities are not left behind. This partnership is one way of making sure that the science reflects the needs, hopes and experiences of the people it's meant to serve. The process is driven by the voices of those with lived experience. carers, and healthcare professionals. During the reporting period, a UK-wide survey was conducted and received over 440 responses. The team is now analysing this rich dataset and reviewing existing research evidence to ensure that future research addresses the priorities that matter most to the sickle cell community. The next phase will involve refining these themes through a second survey and finalising a lop 10 list of research priorities to guide funders and researchers. Improving Equity in the East of England, through advocacy: Advocacy Link Worker In 2024, we appointed our first Advocacy Link Worker an important new role funded in partnership with the Haemoglobinopathy Coordinating Centre {HCC) for North Central London and East Anglia. This marked the start of a pioneering pilot project aimed at tackling health inequalities and improving access to specialist sickle cell care, particularly in low-prevalence areas where patients often face significant barriers to support. In just eight months, the Link Worker has supported more than 250 patients across the East of England. This work has included attending patient education events in Norfolk, Cambridge, and Bedford, launching a localised WhatsApp support group, and delivering critical one-to-one advocacy. Interventions have helped to Prevent delays in A&E admissions and treatment, resolved issues where patients struggled to access GPS or consultants, and provided vital support in cases involving housing insecurity, debt, and Personal Independence Payment (PIP) applications. The early results are encouraging. This pilot is already showing the powerful impact of tsilored advocacy enabling people to better navigate the healthcare system, speak up for their needs, and access the care they are entitled to. It's a model we hope to build on in the future to reduce the marginalisation of people living with sickle cell. This work refiects our wider approach to tackling inequality from all sides-working at a strategic level with partners like the NHS Race and Health Obsetvatory, while also investing in grassroots advocacy that directly supports individuals and delivers meaning￿1 change. 17 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Transition Care Project In March 2025, just four weeks before the end of the reporting year, we appointed a project manager to lead a significant new project aimed at improving transition care for young people with sickle cell. 'Transition' in sickle cell care relates to the transfer of paediatric patients to adult healthcare services, typically during the teenage years. This takes a young person from care managed by a parent or carer, and delivered in a safe and friendly environment through a familiar team - to taking on full responsibility for their own care, in adult hospital settings, sometimes in new clinical spaces in different locations, with new healthcare teams, and the need to have a voice and advocate for themselves. Poorly managed transitions are associated with higher rates of A&E visits, hospitalisations, and complications, as well as a decline in care continuity and patient satisfaction. While some hospitals offer well-structured, fully staffed transition pathways, others fall short. This project follows a successful funding award of £99.886 from the NHS Race and Health Observatory, to lead 2 piece of action research in partnership with the North-East London and Essex {NEL-EI Haemoglobinopathies Coordinating Centres (HCC). The project will explore what young people need to successfully move from paediatric to adult sickle cell services, with a focus on co-production and equity of access. Through a series ofworkshops, peer engagement, and evaluation, the project aims to develop an evidence- based, standardised transition framework-ensuring Ihat mental health support, advocacy, and tailored information are embedded in future care models across the NHS. Although the work began only weeks before year-end. our firstonline workshop for 12-14-year-olds in North East London received very positive feedback. Young people appreciated the accessible health information, practical advice on nutrition, and the open space to ask questions. Every participant agreed that the information was useful to them, and said they learned something new. More workshops and 8 major in-person co-production event will follow in the new reporting period, and we look forward to sharing the full outcomes and impact of this important project in next year's report. Fundraising and Support . Grants and donations This year, we were once again uplifted by the generosity, creativity, and determination of our supporters- individuals, companies, and communities who fundraise, donate, and advocate for better outcomes for people living with sickle cell. We've continued to build strong relationships with corporate supporters, many of whom connect with our mission through their Diversity & Inclusion or Corporate Social Responsibility initiatives. Black History Month remained a particularly active and successful period, generating not just vital income, but also meaningful awareness and visibility. We were honoured to receive support from a wide range of organisations-from consulting firms and transport bodies to faith groups and schools-all helping to amplify our message of equity and representation in healthcare. Challenge events were another major highlight, with fundraisers across the UK taking on incredible physical feats to raise funds and awareness. From marathons and ultra challenges to bake sales and mountain climbs, their efforts helped raise essential funds to support our work. We are especially grateful to all those who ran, hiked, baked, and trekked for sickle cell over the course of the year, often in memory of loved ones or to show solidarity with the sickle cell community. 18 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Together, these efforts not only raise funds but remind us of the deep and growing support for our cause. As ever, we are committed to nurturing these relationships, sharing impact. and expanding opportunities for individuals and organisations to get involved. During the yearwe made funding applications towards core and restricted projects, and initiated or nurtured relationships to help continue to deliver Se￿iCe8. We received income of £123,325 from corporate supporters. See full list of unrestricted donations of £500 and over listed in note 15. Black History Month October's Black History Month remains one of our most active and important periods for fundraising and awareness raising. In 2024, we saw strong engagement across all areas of our work, with an incredible £37, 596 raised to support people living with sickle cell. Although this represents a decrease compared to 2023. irs a significant achievement in the face of a challenging economic and political climate. We've seen a notable decline in corporate engagement, particularly from the US, as many Diversity, Equity and Inclusion IDEI) budgets have been cut or frozen. Even so, Black History Month continues to show clear potential as a major fundraising moment for us. Corporate donations were vital to this year's success. We're especially grateful to the Vitol Foundation UK, part of global energy company Vitol, which contributed an outstanding £25,191. Metro Bank stsff once again showed fantastic commitment, raising £2,605 through their employee raffle a brilliant effort during 8 time of widely reported internal change. Our message to all our donors was clear and consistent.. addressing the deep inequities experienced by people with sickle cell is not optional it's urgent. Many of the organisations that chose to support us did so as part of their Corporate Social Responsibility and Diversity & Inclusion commitments, showing the value of ongoing partnerships rooted in shared values. Contracts During the year, we received a total of £310,663 through contractual service agreements to deliver projects that directly support and empower people living with sickle cell. A significant part ofthis came from the Sickle Cell & Thalassaemia Outreach & Engagement Project, funded by NHS England. In partnership with the NHS Sickle Cell and Thalassaemia Screening Programme and the UK Thalassaemia Society, this work enabled us to raise awareness, improve access to services, and engage communities more effectively. Total income from this project was £129,940. We also received £110,780 from Genomics England to support the Sickle Cell Patient Advisory Group IPAGI, alongside community workshops and surveys. These activities ensured the voices of people with lived experience were heard in key areas of genomics and future research studies. In June 2024, we were awarded a tender funded by the NHS Race and Health Observatory to improve transition services for young people living with sickle cell in North East London. This project focuses on bridging the gap between paediatric and adult care through peer mentoring, co-produced resources, and patient-led insight. Our goal is to empower young people with the tools, confidence, and knowledge to manage their own health as they move into adult services. We received £49,943 for this work. We received £20,000 from NHS England to further support the Patient Advisory Group {PAG) and a workshop focused on empowering and informing the sickle cell community. 19 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 PLANS FOR THE FUTURE As we look ahead, we remain committed to standing alongside everyone affected by sickle cell, and are dedicated to making a difference at every level from working at a strategic level. influencing and advising policymakers,. to working with grassroots organisations, and providing practical SLFPPOrt for individuals and families living with the condition. The year ahead brings both opportunity and uncertainty. We are navigating a time of major change in the NHS, with new strategies emerging that could shape the way care is delivered. It is vital that the sickle cell community is not left behind, and that any opportunity to improve care and support in the new vision of the NHS is firmly grasped. We will continue to advocate for our community at the highest levels, building on the momentum of the NHS Sickle Cell Improvement Programme, and pushing to ensure that sickle cell remains a national priority. At the same time, we are seeing increasing demand for support on the ground- particularly in areas of low prevalence where people too often struggle alone. We will continue to develop and evaluate our pilot advocacy model to tackle inequality from all sides - working with national bodies such as the Race and Health Observatory and delivering practical, person-centred help in emergency departments, communities and homes. Our impact and influence is also growing, so we are seeing more demand for our expertise and expect that to feature slrongly in the year ahead. As awareness has widened, we are also seeing more interest in our running events, and we look fotward to supporting more of our wonderful fundraisers in events like the London Marathon. Our trustee board is also entering a period of renewal, bringing fresh perspectives and energy to our strategic direction. This comes at a time when more people are living with sickle cell than ever before - and living longer- which makes long-term planning, inclusive services and sustainable funding even more critical. Across all of this work, our commitment is to put people affected by sickle cell at the heart of everything we do. Their voices will continue to shape our priorities, partnerships and programmes. 20 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 TREASURER'S REPORT The financial year 202412025 was a year of continued progress in delivering services for people who live with Sickle Cell Disorder (SCD} and their families. l am delighted that the Society has continued to make positive progress for the sickle cell community throughout the year. This has been underpinned by sound financial management and governance. The Society ended the financial year with a surplus of £320,016 which is a great achievement, considering at the start of the year we estimated a deficit of £151,463. Our total income for this financial year is £1,426,839, and a total expenditure of £1,106,823. Congratulations to the leadership team and our dedicated staff for another strong performance. The outlook for the financial year 2025126 will continue to be very challenging for the organisation with a combination of cessation of grant funding and economic uncertainties. Nevertheless, based on our consistent stewardship and good governance, we plan to navigate these serious challenges as best we can to ensure continued services for people who live with SCD and their families. I would like to take this opportunity to thank my colleague trustees, staff, our donors and our volunteers in helping to navigate the challenges we experienced, allowing us to continue to make progress. Julia McLarty Treasurer Date.. STATEMENT OF FINANCIAL POLICIES Investment Policy The Trustees have the power to invest in such assets as they see fit, except for trading purposes. The Society sometimes needs to react very quickly to particular emergencies and has a policy of keeping any surplus funds in short-term deposits, which can be accessed readily. To ensure financial security, the Society needs to secure additional unrestricted funds. Reserves Policy The Trustees of the Sickle Cell Society have set a free reserves policy (which represents total unrestricted funds less tangible fixed assets) of maintaining a minimum ofthree months ofthe Society's total unrestricted expenditure which was £138,161 on 31 March 2025. This policy was met during the financial year to 31 March 2025, with year*nd free reserves of £770,76012024- £633,421), despite the difficulties encountered with securing grants. The Board updated the reserves policy during 202412025 to ensure that it is appropriate and aligned to the Society's financial performance, assessment of risk and future strategy. Risk Management The Trustees actively review the major risks, which the Society faces on a regular basis and aim to maintain our free reserves at the levels stated in the above reserves policy. Combined with our annual review of the controls over key financial systems, they aim to provide sufficient resources in the event of adverse conditions. The Trustees have also examined other operational risks that we face and confirm that they have established systems to mitigate the significant risks. The main risk is the volatile (short term funding) financial environment in which the Society operates. This volatility is compounded by the current political and economic climate, notably the economic circumstances resulting from the impacts of Brexit and COVID-19. This uncertainty is likely to continue.. our focussed approach on strong financial management, good governance and review of our reserves policy will help us to mitigate this risk. 21 The Sickle Cell Society Report and fTnancial statements for the year ended 31 March 202S A fundraising strategy is in place to increase the levels of unrestricted income. The aim is to reverse the current unacceptably high grant-dependent-gearing. and increase the level of unrestricted income reserve, and continued improvement in financial performance. Financial review Income this year stands at £1,426,839, which is £434,340 better than the previous yearfs results. This has been achieved from restricted grant payments of 453,109 and £973,730 from unrestricted income and contracts. The unrestricted income consist of legacies, general fundraising, payroll giving, corporate, individuals, churches, schools, training and consultancy, gift aid, communities. bank interest and contract services. During the year the unrestricted funds incurred a net income of £421,087 12023124.. net income of £236,084). The majority of grants coming into the Society remain under restricted funds to deliver the objectives of the Society. During the year the restricted funds experienced a deficit before transfer of £101,071 (2023124 surplus of £29,270). The total restricted reseNes at the end of the year were £385,260 (2023124.. £346,480). FUNDRAISING STATEMENT We would like to thank you, our dedicated supporters, for your commitment to our work. Your fundraising endeavours have provided the Sickle Cell Society with invaluable resources that enabled us to reach out to more and more people living with sickle cell. Without your help, we could not carry out with the crucial work we do. Thanks to you, we have been able to roll out new initiatives and expand existing ones that meet the daily changes and challenges experienced by people living with sickle cell. The Sickle Cell Society is bound by the Code of Practice dictsted by the Fundraising Regulator and abides by the ethical standards set by the Regulator. We pride ourselves, through our fundraising endeavours, of maintaining the highest standards possible in order to meet the regulations. Our approach has always been to safeguard those who are most vulnerable from inappropriate fundraising practices and conduct ourselves with the utmost professionalism. We are acutely aware that fijndraising is one of the key ways in which we interact with our supporters, donors and the general public. Therefore, our approach ensures that our fundraising practices and reputation are maintained at the highest level. We strive to be an approachable and professional organisation and thus, free membership to the Society includes opt-ins for contact with us and withdrawal from such consent can be easily requested by contacting us at info sicklecellsociet .or We have a Fundraising Working Group that includes Trustee representation and reports on fundraising performance, policy and practice matters to the Board of Trustees. We believe this level of governance allows us to oversee compliance with the regulatory standards. We monitor our fundraising practices closely and can report that we have not received complaints in this regard during the last financial year. As a charity, we are committed to outstanding fundraising conduct and, we have amply achieved this aim. Thank you from the bottom of our hearts for your committed support. Charity Governance Code Sickle Cell Society recognises that good governance in a charity is fundamental to its success. The Sickle Cell Society and its Trustees are continually working towards the highest standard of governance, by reference to the principles and recommended practi￿ of the Charity Governance Code and the Nolan Principles of Public Service. Trustees. responsibilities The Trustees are responsible for preparing the Trustees, report and the financial statements in accordance with applicable law and regulations. Company law requires the Trustees to prepare financial statements for each financial year in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and 22 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 applicable law}. Under company law the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including its income and expenditure, of the charity for the year. In preparing these financial statements, the Trustees are required to= Select suitable accounting policies and then apply them consistently- Make judgements and accounting estimates that are reasonable and prudent., State whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements: Prepare the financial ststements on the going concern basis unless it is inappropriate to presume that the charity will continue in business. The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charity's transactions and disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. Financial statements are published on the charity's website in accordance with legislation in the United Kingdom governing the preparation and dissemination of financial statements, which may vary from legislation in other jurisdictions. The maintenance and integrity of the charity's website is the responsibility of the trustees. The trustees, responsibility also extends to the ongoing integrity of the financial statements contained therein. Provision of information to auditors So far as each of the Trustees is aware at the time the report is approved.. There is no relevant audit information of which the Society's auditors are unaware., and The Trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information. In preparing this report the Trustees have taken advantage of the small company exemptions provided by section 415A of the Companies Act 2006. By order of the Trustees ew Sowemimo Chair 23 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 INDEPENDENT AUDITOR'S REPORT TO THE MEMBERS OF THE SICKLE CELL SOCIETY Opinion We have audited the financial statements of The Sickle Cell Society (the 'charitable company,) for the year ended 31 March 2025 which comprise the Statement of Financial Activities, the Balance Sheet, the Statement of Cash Flows and notes to the financial statements, including significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including FRS 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 charitable company's affairs as at 31 March 2025 and of its incoming resources and application of resources, including its income and expenditure, 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 Companies Act 2006. Basis for opinion We conducted our audit in accordance with International Standards on Auditing {UKI IISAS (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 charitable company 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. Concluslons 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 preparats'on 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 charitable company'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. Other inforniation The other information comprises the information included in the trustees, report, other than the financial statements and our auditor's report thereon. The trustees are responsible for the other information contained within the trustees, report. 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. 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 course ofthe audit, or otherwise appears to be materially misstated. Ifwe identify such material inconsistencies or apparent material misstatements, we are required to determine whether this gives rise to a material misstatement in the financial statements themselves. If, based on the work we have performed, we conclude thatthere is a material misstatement ofthis other information, we are required to report that fact. We have nothing to report in this regard. 24 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Opinions on other matters prescribed by the Companies Act 2006 In our opinion, based on the work undertaken in the course of the audit.. the information given in the trustees, report. which includes the strategic report and the directors, report prepared for the purposes of company law. for the financial year for which the financial statements are prepared is consistent with the financial statements- and the strategic report and the directors, report included within the trustees, report has been prepared in accordance with applicable legal requirements. Matters on which we are required to report by exception In the light of the knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the strategic report or the directors, report included within the trustees, report. We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion= adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us., or the financial statements are not in agreement with the accounting records and returns., or certain disclosures of trustees, remuneration specified by law are not made. or we have not received all the information and explanations we require for our audit., or the trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies, exemptions in preparing the trustees, report and from the requirement lo prepare a strategic report. Responsibilities of trustees As explained more fully in the trustees, responsibilities statement, the trustees (who are also the directors of the charitable company for the purposes of company lawl are responsible for the preparation of the financial statements and for being satisfied that they 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 charitable company'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 charitable company or to cease operations, or have no realistic altemative but to do so. Auditor's responsibillties for the audit of the financial statements 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.. We obtained an understanding of the charitable company and the sector in which it operates to identify laws and regulations that could reasonably be expected to have a direct effect on the financial statements. We obtained our understanding in this regard through discussions with management, industry research, application of cumulative audit knowledge and experience of the sector. 25 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 We determined the principal laws and regulations relevant to the charitable company in this regard to be those arising from Companies Act 2006. the Charities Act 2011 and relevant employee and tax legislation. We designed our audit procedures to ensure the audit team considered whether there were any indications of non-compliance by the charitable company with those laws and regulations. These procedures included, but were not limited to enquiries of management and review of legal expenses and review of Trustee meeting minutes. minutes. We also identified Ihe risks of material misstatement of the financial statements due to fraud. We considered, in addition to the non-rebuttable presumption of a risk of fraud arising from management override of controls, that there isjudgement and estimation involved in the recognition of grant income. We have, for a sample of grant income, reviewed agreements to ensure that income, including accrued and deferred income. have been accounted for in accordance with the financial reporting framework. As in all of our audits, we addressed the risk of fraud arising from management override of controls by performing audit procedures which included, but were not limited to.. the testing of journals., reviewing accounting estimates for evidence of bias,. and evaluating the business rationale of any significant transactions that are unusual or outside the normal course of business. Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in Ihe financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also grealer regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery, collusion, omission or misrepresentation. 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.uklauditorsresponsibilities. This description forms part of our auditor's report. Use of our report This report is made solely to the charitable company's members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company's members 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 charitable company and the charitable company's members as a body, for our audit work, for this report, or for the opinions we have formed. Ala air Duke (Senior Statut Auditor) For and on behalf of PKF Littlejohn LLP Statutory Auditor 15 Westferry Circus Canary Wharf London E14 4HD zs /JA 7oLs 26 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 STATEMENT OF FINANCIAL ACTIVITIES for the year ended 31 March 2025 (Incorporating the Income and Expenditure Account) Total funds 2025 Total Funds 2024 Unrestricted funds Restricted funds Note Income: Voluntary Income 950,437 453,109 1,403,546 976,153 Investment income 23,293 23,293 16,346 Total income 973,730 453,109 1,426,839 992,499 Expenditure Costs of raising funds Fundraising costs 156,015 9,648 165,663 157,047 Charitable activities Campaign 173,855 165,091 338,946 240,481 Direct services group Provision of information and advice Family Retreat I Children's Holiday 150,526 296.122 446,648 186,235 62.333 57,178 119,511 107,037 9.914 26,142 36,056 36,345 Total expenditure 552,643 554,181 1,106,824 727,145 Net income for the year before transfers 421,087 (101,072) 320,015 265,354 Transfer between funds (139,851) 139,851 Net movement of funds in year Reconciliation of funds Total funds brought forward 281,236 38,779 320,015 265,354 14 797,348 346,480 1,143,828 878,474 Total funds carried forward 14 1.078,584 385,259 1,463,843 1,143,828 The Society had no recognised gains or losses during the year other than those shown above. All the above results are derived from continuing activities. The notes on pages 30 to 44 form part of these financial statements. 27 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Balance sheet at 31 March 2025 Company number 2840865 Note 2025 2025 2024 2024 Tangible fixed assets Tangible assets 128,791 154,894 Current assets Debtors and prepayments Cash and cash equivalents 10 12 253,706 1,746,829 176,913 1,028,962 2,000,535 1,205,875 Creditors amounts falling due within one year Creditors 13 665,483 216,941 Net current assets 1,335.052 988,934 Total assets less current liabilities 1,463,843 1,143,828 Represented by.. Unrestricted funds 14 899,551 788,315 Designated Funds 179,033 9,033 Restricted funds 14 385,259 346,480 1,463,843 1,143,828 These accounts have been prepared in accordance with the sp￿la1 provisions relating to companies subject to the small companies regime within Part 15 of the Companies Act 2006 and constitute the annual accounts required by the Companies Act 2006 and are for circulation to members of the company. The accounts were approved and authorised for issue by the Board on itrliq'lt)￿and signed on its behalf by- Trustee Trustee Dr Matthew Sowemimo Julia McLaty 28 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 STATEMENT OF CASH FLOWS for the year ended 31 March 2025 Note 2025 2025 2024 2024 Cash generated in operating activities 19 704,644 315,508 Cash flows from investing activities Interest income Payments to acquire tangible fixed assets 23,293 16,346 {10,070) (9,356) Net cash from investing activities 13,223 6,990 Increase in cash and cash equivalents in the year 717.867 322,498 Cash and cash equivalents at the beginning of the year 12 1,028,962 706,464 Cash and cash equivalents at the end of the year 12 1,746,829 1,028,962 The notes on pages 30 to 44 form part of these financial statements. 29 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 NOTES FORMING PART OF THE FINANCIAL STATEMENTS for the year ended 31 March 2025 Accounting policies Basis of preparation 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 IFRS 102) - {Charities SORP IFRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland {FRS 102) and the Companies Act 2006. The Sickle Cell Society meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s). Going Concern The Board of Trustees have produced a fofecast for the next 12 months from the date of the financial statement was authorised. The forward look forecast for the next 12 months shows that the Charity has sufficient funds and reserves to enable us to meet Ouf obligations as they fall due for a period of at least 12 months from the date when the financial statement is authorised for issue. As such. the board is satisfied that the organisation has adequate resources to continue to operate for at least the next twelve months. For this reason, we continue to adopt the going concern basis for preparing these financial statements. Income Income is recognised when the charity has entitlement to the funds, any performance conditions attached to the item(s) of income have been met, it is probable that the income will be received and the amount can be measured reliably. Income from government and other grants, whether 'capital' grants or 'revenue' grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably 2nd is not deferred. For legacies, entitlement is taken as the earlier of the date on which either.. the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor{s) to the Trust that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executorfs intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is treated as a contingent asset and disclosed if material. Donations in kind are included in the accounts at market value. 30 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Deferred income Income is only deferred when either the donor specifies that the grant or donation must only be used in future accounting periods, or the donor has imposed conditions which must be met before the Society has unconditional entitlement. Tangible fixed assets and depreciation Tangible fixed assets are stated at cost less depreciation. Depreciation is provided at rates calculated to write off the cost less estimated residential value of each asset over its expected useful life, as follows- Fixtures, fittings and equipment Leasehold Improvements 250￿ straight line Shorter of ten years or lease term Expenditure Expenditure is recognised on an accruals basis as a liability is incurred and includes attributable VAT which cannot be recovered. Costs of raising funds comprise the costs associated with the Society's fund raising activities. Expenditure on charitable activities comprises those costs incurred by the Society in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them. Allocation of Support and Governance costs All costs are allocated between the expenditure categories ofthe Society on a basis designed to reflect the use of the resource. Costs relating to a particular activity are allocated directly., others are apportioned on an appropriate basis as set out in Note 5. Governance costs include those costs associated with meeting the constitutional and statutory requirements of the Society and include the audit fees and costs linked to the strategic management of the Society. Operating leases Assets held under lease arrangements where the title to the equipment remains with the lessor are classified as operating leases by the charity. Rental charges are charged on a straight line basis over Ihe term of the lease. Pension costs The Society operates a defined contribution pension scheme. The pension costs charge represents contributions paid during the year. The pension scheme's assets are held separately from those of the society and are managed by independent fund managers, who alone are responsible for matters of investment policy and the actual payment of the pensions to the persons so entitled to it. Restricted funds Restricted funds are to be used for specific purposes as laid down by the donor. Expenditure which meets these criteria is identified to the fund. Unrestricted funds Unrestricted funds are donations and other income receivable or generated for the objects of the Society without further specified purpose and are available for use at the discretion of the Trustees in furtherance of the general objectives of the Society. 31 The Sickle Cell Society Report and financial statetnents for the year ended 31 March 2025 Designated Funds Designated Funds are funds earmarked by Trustees for a particular purpose. Accounting Estimates and Key Judgements In the process of applying the charity's accounting policies described in this note, judgements and estimates are made that have an effect on the reported amounts of assets, liabilities, revenue and expenses during the reporting period. Significant estimates made in the course of preparing the financial statements include the recognition of grant incorne and cost allocation for which the accounting policies have been noted above. Legal status of the Society The Society is a company limited by guarantee and has not share capital, domiciled in England and Wales, company registration number 2840865. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the Society. Vountary Income Total 2025 Total 2024 Unrestrlcte Restrl¢ted Unrestricted Restricted Donations and legacies Grants Contract I ncome 639,774 639.774 453.109 310.663 493,768 493,768 301,527 180,858 453,109 301,527 310,663 180.858 950,437 453,109 1,403,546 674,626 301,527 976,153 Investment income Unrestricted Unrestricted 2025 2024 Bank and COIF deposit interest 23,293 16,346 32 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Expenditure Direct costs Staff costs Support costs Total 2025 Total 2024 Costs of raising funds Fundraising costs 57,384 64,304 43.975 165,663 157,047 Charitable activities Campaign Direct services group Provision of information and advice Children's Activities & Family Retreat 119,190 220,564 129,782 107,520 89,974 118,564 338,946 446,648 240,481 186,235 23,678 64,108 31,725 119,511 107,037 26,485 9,571 36,056 36,345 Total expenditure 447,301 365,714 293,809 1,106.824 727,145 Analysis of support costs Other Support Costs Office and IT costs Staff related costs Governance cost5 Total 2025 Total 2024 Charitable activities Fundraising costs Campaign Direct services group Provision of information and advice Children's Activities & Holiday 11,365 23,252 30,640 13,178 26,963 35,530 15.282 31,268 41,204 4,150 8,491 11,190 43,975 89,974 118,564 57,432 87,943 68,105 8,199 9,507 11,025 2,994 31,725 39,143 2.474 2,868 3,326 903 9,571 13,291 Total support costs 75,930 88,046 102,105 27,728 293,809 265,914 Total expenditure in the year to 31 March 2025 was £1,106,823 {2024.. £727,145) of which £552,643 12024- £454,888) was unrestricted and £554.180 (2024.. £272,257) was restricted. 33 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Staff cost and numbers 2025 2024 Wages and salaries Social security Pension 414,610 35,940 17,270 311,664 27,103 17,839 467,820 356,606 The average number of employees during the year was 15 (2024.13). No employee earned more than £60,000 per annum (2024: None). Remuneration of £1,494 was paid to Lanre Ogundimu for professional services carried out with the South East London Mentoring Project, offering mentoring services to Children and Young people in the region. Her position as a Mentor was discussed with the Board of Trustees, including checking that there was no conflict of interest. £4,935 was paid to Zainab Garba-sani. This amount relates to remuneration from Genomics £4,485 (Co-chair Patient Advisory and attending Sickle working group) and remuneration from NHS £450 (Chairing the Sickle Cell Patient Advisory Group). Reimbursement of for travel and accommodation to 3 trustees (£894), membership cost to Association of Chairs membership (£60}, and Refreshment for meetings1£73) totalling £1,02712024.' £1,326). The key management personnel of the Society comprise of the Chief Executive Officer. The total employee benefits of the key management personnel of the Society are £55.176 salary and £6,405 Nl, total £61,58212024. £61,082). Net Income for the year 2025 2024 Is stated after charging- Depreciation on owned assets Auditors, remuneration (including VAT)- Audit fees Equipment rental Property LeaselRent- 56 Station Road 36,172 35,262 12,390 5,041 9,600 11,970 9,600 Taxation The Society is a charity within the meaning of Para 1 Schedule 6 Finance Act 2010. Accordingly, the company is potentially exempt from taxation in respect of income or capital gains with categories covered by chapter 3 of Part 11 of the Corporation Tax Act 2010 or section 256 of the Taxation of Chargeable Gains Act 1992, to the extent that such income or gains are applied exclusively to charitable purposes. No tax charge arose in the period. 34 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Tangible Fixed Assets Leasehold Improvements Furniture & Equipment Total Cost At beginning of year Additions Disposals 200,772 58,467 10,070 259,239 10,070 At end of the year 200,772 68,537 269,309 At beginning of year 63,651 40,694 104,345 Charge for the year Disposal 27,280 8,893 36,173 90,931 49,587 140,518 At end of the year Net Book Value As at 31 March 2025 109,841 18,950 128,791 As at 31 March 2024 137,121 17.773 154,894 All of the above assets were used for direct charitable purposes during the year. 10 Debtors 2025 2024 Grants and Legacies receivable (note 11) Prepayments 244,233 9,473 164,689 12,224 253,706 176,913 11 Grants & Legacies receivable 2025 2024 Barts Healthcare Trust UCLH NHS Foundation Trust 62,113 2,363 26,745 153,012 Genomics England Legacies Mentoring Project (London) 107,740 56,949 244,233 164,689 35 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 12 Cash and cash equivalents 2025 2024 Cash in hand Natwest Reserve Account Natwest Current Account COIF Charities Deposit Fund Paypal 206 1,574,752 100 168,608 3,163 15 867,363 100 160,650 834 1,746,829 1,028,962 13a Creditors - amounts falling due within one year 2025 2024 Trade creditors Accruals and deferred income 168,560 496,923 74,074 142,867 665,483 216,941 13b Deferred Income Reconciliation 2025 2024 Balance as at 1 April Amount Released to Income Amount deferred in the year 92,249 {54,749) 351,340 27,995 {27,9951 92,249 Balance as at 31 March 388,840 92,249 36 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 14 Analysis of charitable funds Balance 1 April Movement in funds Balance 31 March 2024 Income Expenditure Transfers 2025 Restricted funds Family Retreat I Children's Holiday scheme Volunteer Project Research Helpline Worker CLAHRC APPG for Sickle Cell & Thalassaemia Refurbishment Income NHS England Mentoring Programme Give Blood Spread Love Public Awareness Campaign - Priapism Genomics England Northwest England Children & Young People Peer Mentoring Project UCLH NHS Foundation - Advocacy Barts NHS Trust- NEL Community Projects 887 26,456 26,485 7,417 858 7,417 46,227 46,227 58,437 58,437 2,995 2,995 31,540 39,156 7,616 23,365 2.500 65.469 23,365 2,500 190,310 81,601 279,992 15.220 155,151 66,381 68,404 56,593 68,404 15,762 40,831 80,040 37,611 42,429 18,901 18,901 81,000 50,932 30,068 Restricted funds 346,480 453,109 554,181 139,851 385,259 Unrestricted funds General fund Designated Funds 788,315 9,033 973.730 552,643 (309,8511 170,000 899,551 179,033 Total funds 1,143,828 1,426,839 1,106,824 1,463,843 37 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Analysis of charitable funds- previous year Balance 1 April Movement in funds Balance 31 March 2024 2023 Income Expenditure Transfers Restricted funds Family Retreat I Children Holiday scheme Jeans for Genes Research Helpline Worker CLAHRC APPG for Sickle Cell & Thalassaemia Refurbishment Income NHS England Mentoring Programme Give Blood Spread Love Nursing Workforce Public Awareness Campaign - Priapism Genomics England Northwest England Children & Young People Peer Mentoring Project 23,941 3,000 1,000 23,054 15,287 887 12,287 45.227 46,227 48,111 48.111 2,995 2,995 14,000 27,224 4.348 13,224 4,348 23,365 2,500 23,365 2,500 65,469 137,697 21,849 20,000 72,228 44,298 20,000 22,449 68,704 74,000 300 17,407 68,404 56,593 80,040 80,040 Restricted funds 216,791 301,527 272,257 100,419 346,480 Unrestricted funds General fund Designated Funds 652,650 9,033 690.972 454,888 (100,419) 788,315 9,033 Total funds 878.474 992,499 727,145 1,143,828 38 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Restricted Funds The purpose of each of the restricted fvnds is as follows= Annual Children's Holiday schemelFamily Retreat Each year, we run a Children's holiday for young people with sickle cell. For the three years during the COVID-19 pandemic, the holiday was held virtually. The virtual holiday offered additional value by including parents and siblings in the experience. As a result, in 2023 the Sickle Cell Family Retreat was born. We held the second Family Retreat during 2024, with a group of families with at least 1 child with sickle cell. The Retreat was held at the Pioneer Centre in Shropshire. £26,456 was received in 2024125 towards this project. Volunteer Programme - no funding was received towards the Volunteer Project in 2024125. £7,417 was transferred from the unrestricted funds to support this work during this year. Research and Development The Society is increasingly actively involved with research and development initiatives at different levels with the NHS, Academic Institutions and Industry. These funds will be used as a contribution to support our funding applications to fund Research and Development bursaries. Helpline Worker To provide telephone and email advice, information and support for people, living with sickle cell, their families and carers. A transfer of £58,437 was made from the unrestricted funds in 2024125 to carry out this service. CLAHRC, LSHTM and Sickle Cell Society Collaborative Project Following the work of the BUPA-funded 'Self Over Sickle. project which provides advice, support and testimonials for young adults around transition. this work will drive visibility of the person behind the sickle cell via an ad campaign in London and aim to build confidence of young adults with the condition via an online resource pack signposting services and techniques to enhance one's quality of life living with sickle cell. Sickle Cell and Thalassaemia All-Party Parliamentary Group (SCTAPPG) We continued to provide the secretarial of the SCTAPPG. Three restricted grants were received total of£31,540, £16,540 from Vertex Pharmaceuticals, £10,000 from Pfizer and £5,000 from Terumo BCT. £7,616 was transferred from the unrestricted fund to help carry out this service. Office Refurbishment Phase 1 of the Sickle Cell Society Headquarters refurbishment has now been completed. We are currently seeking funding towards Phase 2 work. Mentoring Project The Young Person's Mentoring Scheme aims to improve the health and wellbeing of young people living with sickle disorder. The programme began in North East London ICB {NELI. We're pleased to now have rolled the service out to the other 4 London regions ,' North West London (NWLI, North Central London (NCL), South West London {SWL) and South East London. A total of £279,992 was received during 2024125 to carry out this service. Give Blood, Spread Love, England and Digital Marketing - Blood Donation Digital Marketing for the Give Blood, Spread Love, England programme, which aims to increase the number of people from black heritage communities who donate blood in areas beyond South London. Give Blood, Spread Love uses new media to build awareness, share facts, breakdown myths and direct people to sign up to the blood donation register online, and go a step further by asking peers to do the same. Public Awareness Campaign - Priapism This Campaign raised awareness about priapism, which can affect males who live with sickle cell. The campaign targeted Healthcare professionals, men and young boys, and parents. Funding for the project was provided by Boston Scientific International. 39 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Genornics England We secured funding from Genomics England to appoint a new SCSIGenomics England Partnership role for 18 months, six months of which have been completed. We plan to deliver a priority setting exercise for future genomics research into Sickle Cell Disorder. North West and South Yorkshire Mentoring Project This is a pilot scheme aimed at improving the health and wellbeing of children and young people in North West England and South Yorkshire. focussing on Manchester, Liverpool and Sheffield. £80,040 was received during 2023124, and the new project began in July 2024. UCLH NHS Foundation Trust (Red Cell Network) - Advocacy Our Link Advocacy worker for North East London seeks to reduce the marginalisation of people by addressing inequalities they face in living with sickle cell disorder. The postholder provides advice, information and support to patients, carers and professional stsff, across the East of England. Barts NHS Trust- North East LondonlNEL) Community Projects With support from the NEL Community Fund, we are now in the early stages of delivering a wide- ranging programme of work to support individuals and families affected by sickle cell across North East London. This funding will enable us to roll out several new initiatives that respond directly to the needs of the SCD community. 15 Unrestricted donations, legacies and fundraising - £500 & Over Legacy of late Evanie Andrews Community and challenge events fundraising (Just Giving) Garfield Weston Foundation Vitol Foundation Bloomberg LP Lewisham Cemelery and Crematorium Legacy of late Ms Sheila Ryan Community Event Fundraising (CAF - ONLINE) C.E.X Limited Facebook Atkins Realis Group Inc Melissa Thompson and Bleecker Street Burgers Ltd Russell Gundry (Gift in kind) Anonymous in lieu of fees Bola Owolabi Eugene Oteng - Ntim Sonia Wolf John Bradley Nathalie Kingston Metro Bank FundApps Lloyds Bank Zscaler Transport for London Bexley Grammar School Edgar Cornelius {EMC Promotions) Pearson Aigbogun Generation Foundation 110,000 87,827 30,000 25,191 11,800 11,600 9,994 6,407 7,183 7,142 5,000 5,000 4,635 3,000 3,000 3,000 3,000 3,000 3,000 2,605 2,600 2,395 1,808 1,750 1,737 1,650 1,500 1,500 40 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Leicestershire Law Society London Ambulance - Shurelle Elevique Bianca Okoye Citi Bank Becket Keys School Belinda Walkingshaw and Jury O'shea LLP (Gift in kind) Solar Radio (Clive Richardson) Tesco Mobile Lewis Communications Ltd Scottish and Southern Energy PLC Aviva UK Arriva UK Bus Limited Bio Products Laboratory Ltd Gloria Antwi-Ahima Karen Pritchard Ann Styles Anonymous Elizabeth Williams Amicus Therapeutic Tieran Dubique Pollards Hill Baptist Church Ark Academy The Hello Lodge The Pyramid School Monzo Bank Vibes Music Lounge The Tabernacle Global Ministries Christmas Carol service (Shell) Depop Limited Samuel Chuku Boguslawa Paszel Hogan Lovell International LLP Addison Lee Ltd Charter North School Jo Rooney St Augustine Church Jennifer Swimley T K Maxx and Home Balham and Tooting Community Association The Goodwill Lodge L5397 BNP Paribas London branch Lloyds Bank Foundation M&G Investments Obinna Udekwereze Osa Pretoru Jo Drummond (Mace Group) 1,361 1,353 1,316 1,257 1,250 1,080 1,000 1,000 1,000 1,000 1,000 1,000 1,000 1,000 1,000 1,000 1,000 1,000 970 958 911 906 880 858 855 800 800 789 724 700 692 658 642 641 630 600 511 500 500 500 500 500 500 500 500 500 41 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 Daniel Poser Adetola Oyegbite {Varo Partners) 500 500 16 Analysis of net assets between funds 2025 Total Funds Unrestricted Restricted Tangible assets Current assets Current liabilities 128,791 1,615,275 {665,483) 128,791 385,260 2,000,535 1665,483) Net assets 1,078,583 385,260 1,463,843 Analysis of net assets between funds - previous year 2024 Total Funds Unrestricted Restrlcted Tangible asset5 Current assets Current liabilities 154.894 859,395 (216,941) 154,894 346,480 1,205,875 (216,941} Net assets 797,348 346,480 1,143,828 17 Transfer between funds During the year the Trustees agreed transfers of £139,851 (2024.. £95,171) from unrestricted funds to make good the deficits on the restricted funds and as a requirement of part funding. Transfers were made to Volunteer Project, Helpline Services, APPG for Sickle Cell & Thalassaemia Project, and Give Blood Spread Love Project. £170,000 was designated from the unrestricted funds to support 4 projects in 2025-2026. As at 31 March 2025 the designated funds currently stand at £179,033. No transfer was made from the designated funds in 2024-25 financial year. See nole 14 for further breakdown. 18 Leasing commitments The Society is committed to make the following minimum lease payments under operating leases for equipment: 2025 2024 Commitments expiring.. Within 1 year Within 2 to 5 years 13,597 32,384 15,152 16,096 45,981 31,248 42 The Sickle Cell Society Report and financial statements for the year ended 31 March 2025 19 Reconciliation of operating result to net cash inflow from operating activities 2025 2024 Net Movements in Funds Depreciation Interest income (Increase)IDecrease in debtors (Increase}IDecrease in creditors 320.015 36,173 (23,293) (76,793) 448,542 265,354 35,262 (16,346) 118,507) 49,745 Net cash generated from operating activities 704,644 315,508 20 Related party transactions There are 2 related paty transactions during 2024-25 financial year. Please refer to note 6 for details of transactions. 43