2025-03-31-accounts

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Registered charity numbers: 1114195 and SC039299 Registered company number: 05772999

GENETIC ALLIANCE UK ltd

Annual Report and Financial Statements for the year ended 31 March 2025

Report of the Board of Trustees

For the year ended 31 March 2025

The Trustees, who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statement of the charity for the year ended 31 March 2025.

The Trustees have adopted the provision of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).

Welcome from the Chair ..................................................................................................................... 3 Genetic, Rare and Undiagnosed Conditions in numbers .................................................................. 4 Objective and Aims .............................................................................................................................. 5 Highlights and Impact 2024–25 .......................................................................................................... 7 Patient Voice at the Centre ................................................................................................................. 9 Campaigns and Advocacy ................................................................................................................. 11 Research and Innovation .................................................................................................................. 14 Membership and Partnerships ......................................................................................................... 16 SWAN UK – Supporting families without a diagnosis ...................................................................... 17 Future plans ....................................................................................................................................... 18 Thank you to our supporters and funders ....................................................................................... 19 Treasurer’s letter and financial review ............................................................................................. 21 Structure, governance and management ........................................................................................ 23 Reference and administrative detail ................................................................................................ 24 Trustee responsibility ....................................................................................................................... 25 Independent auditor’s report ........................................................................................................... 27 Financial statements .........................................................................................................................32

Cover photograph by Dylan Lombard as part of his submission to the ‘More than you can imagine’ anthology

Genetic Alliance UK – contactus@geneticalliance.org.uk – geneticalliance.org.uk Registered charity numbers: 1114195 and SC039299

Registered company number: 05772999

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 2

Welcome from the Chair

This year marked a new chapter for Genetic Alliance UK. In April 2024, we began implementing our new five-year strategy – a far-reaching plan to ensure the ambitions of the UK Rare Diseases Framework that matter most to people living with genetic, rare or undiagnosed conditions drive action and improvement across the four nations.

It has also, again, been a year of change and challenge for GA-UK, and one of success. Early on, we said a fond farewell to our CEO, Louise Fish, after two years of impactful leadership. The ensuing months of transition saw the appointment of Louise’s successor, completing an organisational restructure alongside a reduction of the team in recognition of the financial challenges we continued to face this year. I am glad to say that these steps, while difficult but essential to strengthen our financial sustainability, were successful. As always, the Board is grateful to our staff, past and present, for their resilience and commitment, which ensured we continued to deliver for our community without interruption.

Throughout the year our priority has been to put our community’s voice at the heart of everything we do. Across the UK, we amplified the lived experiences of people with rare conditions in policy, practice, and research – working with government, research funders, the NHS, industry, and academia to secure change. I am particularly pleased to highlight significant progress in:

Supporting undiagnosed families – through SWAN UK, we expanded our reach to 160 individuals and 153 families, delivered inclusive events across England, and launched new resources for professionals to better support children with suspected genetic conditions
Shaping national policy – taking a leading role in implementing the UK Rare Diseases Framework, successfully influencing newborn screening reform, access to medicines, and genomic service delivery.
Driving high-profile campaigns – our ‘More than you can imagine’ Rare Disease Day campaign brought together creative voices from over 50 conditions, reaching more than a million people.
Delivering practical resources – launching our new ‘Seeking a Rare Diagnosis’ guides, coproduced with families, clinicians, and member charities.
Strengthening public engagement – reaching thousands through events, workshops, and forums from schools to parliaments.

This work has been possible thanks to the dedication of our staff, trustees, volunteers, and our growing membership of over 220 charities and support groups.

I must also record thanks to our funders and partners, whose investment in our work has been invaluable and has extended and amplified our reach and impact.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 3

At the very end of the year and as we look ahead to 2025–26, we will continue to focus on seeking to secure a renewed UK Rare Diseases Framework, improving diagnosis and care pathways, and ensuring our community’s voice shapes the future of healthcare innovation. We will do this as we also look forward to appointing a new Chief Executive following the resignation of Mark Flannagan in February 2025. This is an opportunity to bring forward a period of calm, commitment and sustainability as we now see continuing improvements in our financial position and with the prospect of even greater drive, enthusiasm and success in our next chapter.

I am delighted to be able to continue to play my part alongside all of our community. Together we are turning rare experiences into lasting change.

Elizabeth Porterfield, MBE

Chair of the Board of Trustees

Genetic, Rare and Undiagnosed Conditions in numbers

There are around 7,000 rare conditions, with new conditions regularly identified through scientific progress
One in 17 people are affected by a rare condition at some point in their lives
Rare conditions are individually rare but collectively common, with over 3.5 million people in the UK living with a rare condition
A rare condition is a condition that affects fewer than one in 2,000 people
Seven in 10 rare conditions affect children
More than 3 out of 10 children with a rare condition die before their fifth birthday

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 4

Objective and Aims

Genetic Alliance UK (the ‘charity’) is an alliance of over 220 charities and support groups. We have a thirty-year track record of working together to improve the lives of people in the UK living with genetic, rare and undiagnosed conditions.

The Board of Trustees confirm they have had regard to the Charity Commission’s guidance on public benefit, and have complied with their duty under section 4 of the Charities Act 2021 when reviewing the charity’s aims and objectives and in implementing current and future planning activities.

We run two long-standing projects:
Rare Disease UK, a campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible. Rare Disease UK is the official UK organiser of Rare Disease Day.
SWAN UK, the only dedicated support network in the UK for families affected by a syndrome without a name, a genetic condition so rare that it often goes undiagnosed.

In April 2024 Genetic Alliance UK began the implementation of our new five year Strategy for 2024 to 2029.

The development of our new strategy involved consultation with members, supporters and funders. The strategy was launched at the charity’s Annual General Meeting in Autumn 2023. This is the first financial year where we have developed a business plan and budget setting out our work for the coming year based on the aims and objectives in our new strategy.

Genetic Alliance UK’s Strategy 2024-29

Our purpose (why our alliance exists) is to work together to improve the lives of 3.5 million people in the UK living with lifelong and complex genetic and rare conditions.

Our aim (what we will do) is to make sure the ambitions in the UK Rare Diseases Framework that matter most to people living with genetic and rare conditions drive action across the four nations.

Our objectives to deliver on this strategy (how we will do it):

Influencing national policy and provision where it matters most by:

Championing timely diagnosis and better coordinated care and treatment for people living with genetic and rare conditions.
Making sure an understanding of what is most important to people living with genetic and rare conditions shapes research, policy, regulation, practice and the development of new medicines and therapies.

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Annual Report 2024-25 – Page 5

Ensuring scientific breakthroughs in genomics reach people living with genetic conditions in a timely fashion through research programmes and routine diagnostic and clinical services.
Promoting opportunities to expand newborn and population screening for genetic and rare conditions in line with international best practice.

Making sure our influencing drives action across both policy and practice.

Tracking how people with genetic and rare conditions are affected by this action across the four nations.

Our critical success factors (how we are going to get there)

Building a robust, resilient and flourishing alliance in terms of members, income, staff and trustees.
Working collaboratively with key stakeholders such as umbrella groups for genetic and rare conditions, healthcare professional bodies and industry.
Developing an effective influencing strategy to drive action related to the ambitions in the UK Rare Diseases Framework that matter most.
Monitoring and evaluating implementation of the UK Rare Diseases Framework.

Our enablers (the things that will make it possible) to deliver this strategy are:

Putting our members and the people living with genetic and rare conditions they support at the heart of everything we do: listening to their experience, learning from their expertise, helping members share knowledge with each other, and ensuring our voices are stronger when we work together.
Professionalising our approach to membership, income generation, corporate services and communications.
Building on the strengths of our well-regarded policy and research teams.
Investing in our staff and supporting their training and development.
Recruiting and retaining trustees with the skills, knowledge and diverse perspectives needed to scrutinise and shape our work.

Our values (the things we believe are important)

We believe we are people-centred, collaborative, inclusive, influential, evidence-led, knowledgegenerating and independent.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 6

Highlights and Impact 2024–25

This year we have:

Influenced policy at the highest level

Represented the rare condition community at the UK Rare Diseases Framework Board and in devolved implementation groups.
Contributed to over 25 national and international advisory boards, including the UKNSC Blood Spot Task Group, Genomics Leadership Group (Scotland), and Genomics Partnership Wales Programme Board.
Achieved references to our work in ministerial speeches in Wales, England, and Scotland on Rare Disease Day 2025.
Brought our community’s perspectives to the design of the 10 Year Health Plan for England.

Delivered high-profile campaigns

Brought genetic, rare and undiagnosed conditions to the attention of candidates in the General Election.
Rare Disease Day 2025 – ‘More than you can imagine’, anthology of over 60 creative submissions representing more than 50 conditions; launched alongside a policy report calling for renewal of the UK Rare Diseases Framework.
Hosted parliamentary receptions in Westminster, Holyrood, and Senedd, plus a UK-wide virtual event – engaging over 400 stakeholders.
Media reach of over 1.1 million through national and regional outlets.

Strengthened patient voice

Expanded our Patient Empowerment Group (PEG) to more than 30 active members, contributing to advocacy on rare condition data registration, equitable access to medicines, and mental health policy.
Supported the England Rare Disease Action Plan Patient Advisory Group, providing lived experience perspectives on service delivery.

Produced practical resources

Launched the Seeking a Rare Diagnosis (SARD) guides for adults and children – co-produced with clinicians, patients, and carers.
Made guides available online, in print, and as co-brandable PDFs for member organisations.

Advanced research and innovation

Completed an international review of newborn screening decision-making in 10 countries.
Partnered with LifeArc Translational Centres for Rare Disease to develop a PPIE strategy and policy priorities.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 7

Engaged the public

Through our collaboration with the Wales Gene Park, delivered over 70 events reaching 3,000+ people – including public talks, careers sessions, science festival activities, and Genomics Cafés.
Awarded ‘Best Engagement Stand’ at the Health and Care Research Wales Annual Conference.

Built stronger partnerships

Supported our member charities through member briefings, peer networking, and resourcesharing.
Collaborated with Neurological Alliance, Specialised Healthcare Alliance, RareMinds, Beacon, Medics4RareDiseases, and ATMP Engage on joint campaigns and events.

Parliamentary Under Secretary of State Ashley Dalton MP, speaks at the Westminster Rare Disease Reception, February 2025

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 8

Patient Voice at the Centre

Placing the voice of people living with genetic, rare and undiagnosed conditions at the heart of decision-making is at the core of our mission. This year, our Patient Empowerment Group (PEG) has been central to shaping policy, research, and practice.

Expanding our influence

PEG grew to over 30 members, bringing together expert representatives from across the UK – including those holding formal patient voice roles in the implementation of the UK Rare Diseases Framework. Members contributed perspectives grounded in lived experience on priorities such as:

Data collection and sharing through national rare disease registration services - with representatives of National Disease Registration Service consulting PEG.
Equitable access to medicines – influencing NICE and MHRA processes.
Care coordination – advising on national Quality Standard development for rare conditions.

Shaping national frameworks

Presented cross-nation recommendations on collaboration and expansion of action plan commitments to the England Rare Disease Action Plan Delivery Group.
Advised on devolved action plans in Wales and Scotland, ensuring shared learning between nations.
Informed the NHS England 10-Year Plan consultation via a dedicated rare condition workshop in collaboration with Association of Medical Research Charities.

Ensuring representation in key policy areas

Contributed to newborn screening reform through the UKNSC Blood Spot Task Group and consultation on our international review recommendations.
Engaged with the Generation Study on newborn genomic sequencing, providing feedback on materials and process from the community’s perspective.

Building capacity and connection

Five PEG meetings were held in 2024–25, supplemented by working group activity between sessions.
Members were supported with policy updates, training opportunities, and peer discussion space.
Collaboration with the Northern Ireland Rare Disease Partnership ensured input from all four nations.

‘Thanks again for all your and GAUK’s support. The team have all been a tremendous support to us specifically and indispensable voice in the sector more broadly.’ – PEG member

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 9

Through PEG and our wider networks, we are building a confident, informed, and connected community that can influence the policies and practices that shape lives.

Dylan Lombard and Kimberley Stewart Beasley, speakers at the Holyrood Rare Disease Day Reception, March 2025

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 10

Campaigns and Advocacy

Our campaigns are the most visible part of our work – raising awareness, building understanding, and driving the political will for change. This year, our advocacy work has spanned the UK and reached far beyond our borders.

Rare Disease UK

Rare Disease UK, our long-running campaign, continues to unite the voices of people living with genetic, rare and undiagnosed conditions. Through research, policy engagement, and creative storytelling, we’ve amplified the experiences of our community in ways that connect directly with decision-makers.

Rare Disease Day 2025 – ‘More than you can imagine’

This year’s theme celebrated the creativity, resilience, and diversity of the rare condition community while underlining the urgent need for continued policy action.

Anthology and Policy Report – Over 60 creative submissions from people aged 9 to 71, representing more than 50 conditions, were brought together in an anthology. Alongside it, we launched a policy report calling for a renewed UK Rare Diseases Framework.
Parliamentary Receptions – Hosted events in Westminster, Holyrood, and the Senedd, plus a UK-wide virtual reception, reaching more than 400 attendees in total.
High-profile launches – England’s 2025–26 Rare Diseases Action Plan was launched at our Westminster reception by Ashley Dalton MP, Parliamentary Under-Secretary of State for Health and Social Care.
Media and Public Engagement – Coverage in BBC, Telegraph, Metro and specialist media, with an estimated reach of 1.1 million.
Creative impact – Exhibitions of anthology submissions at parliamentary events, sharing the personal stories behind the policy priorities.

‘Great to hear talks from people who battle rare conditions and to see people who can make change in the field showing real passion for our community.’ – themyasthenicmedic, Holyrood reception attendee, instagram

Shaping National and Devolved Policy

With the 10 Year Health Plan for England on the horizon:

We ensured that the voices of the 3.5 million people living with genetic, rare, and undiagnosed conditions remained central to the national conversation around the NHS 10‑Year Plan for England, calling urgently for explicit recognition of their complex needs within the plan.
We co-hosted a workshop with the Association of Medical Research Charities to perform a deep-dive into rare condition research opportunities that should be captured in the plan.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 11

Contributions to the ‘More than you can imagine’ anthology, by (clockwise from top left), Marian Adejokun, Matilda Tumim, and retiring Trustee, Phillippa Farrant.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 12

We worked continuously to influence policy in all four nations:

Re-established the All-Party Parliamentary Group on Genetic, Rare and Undiagnosed Conditions and delivered associated meetings.
Led a newborn screening parliamentary drop-in event in Scotland and delivered the ‘How Decisions Are Made’ Scottish project.
Issued open letters to NHS England and worked collaboratively with the Specialised Healthcare Alliance and National Voices to secure our community’s needs in the merger between NHS England and the Department of Health and Social Care.
Delivered targeted engagement in Wales and Scotland, through stakeholder forums, policy submissions, parliamentary and public events.
Continued our collaboration with the Northern Ireland Rare Diseases Partnership.
Worked with Department of Health and Social Care on the Down Syndrome Act, to ensure the resulting guidance is fair to all people affected by genetic conditions.

Jeremy Miles MS, Cabinet Secretary for Health and Social Services (second from right), with fellow speakers (from left) Anthony Pemberton, Dr Jamie Duckers, Rhiannon Edwards, Emily Taylor, John Griffiths MS and Nick Meade, at the Welsh Rare Disease Day reception in February 2025

We also ensured our members’ voices were heard in key policy decisions:

Responding to consultations – we submitted 14 consultation responses on behalf of our members to bodies including the UK National Screening Committee, Science, Innovation and Technology Committee, NICE, NHS England, Department for Work and Pensions,

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 13

Department of Health and Social Care, Medicines and Healthcare Products Regulatory Authority (MHRA), Welsh Government, NHS Wales, Advanced Therapy Wales, and the World Health Organization.

Providing expert evidence – we supplied 43 condition-specific statements to the Human Fertilisation and Embryology Authority (HFEA) to support decision-making on preimplantation genetic testing.

‘The Committee wanted to pass their thanks on for these statements. They found your statement for DGI1 particularly helpful and they said this helped sway their decision to authorise this condition.’ – Human Fertilisation Embryology Authority on behalf of their Statutory Approvals Committee

International Collaboration

As members of EURORDIS and Rare Disease International, we continued to ensure UK perspectives shape global rare condition policy and practice. This included chairing a plenary session at the European Conference on Rare Diseases in Brussels and contributing to the International Consortium on Newborn Sequencing.

Our campaigns this year have demonstrated that combining evidence, creativity, and strategic engagement is the most effective way to achieve lasting change.

Research and Innovation

Research is key to transforming diagnosis, treatment, and care for people living with genetic, rare and undiagnosed conditions. Our role is to ensure that this research is shaped by the needs, priorities, and experiences of our community.

Newborn Screening: International Review

In 2024–25, we worked on a major international review of how newborn screening decisions are made in 10 countries. This work included:

Interviews with experts in genomics, ethics, policy, and patient advocacy, both in the UK and overseas.
Analysis of decision-making frameworks, criteria, and governance structures.

These findings will inform our forthcoming UK policy report and campaign, aiming to modernise and expand newborn screening in line with international best practice.

Generation Study

We supported Genomics England’s Generation Study, which explores the potential for genomic sequencing in newborns, by:

Reviewing participant materials for clarity and accessibility.
Advising on approaches to consent and family engagement.

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Annual Report 2024-25 – Page 14

Connecting study leaders with lived experience networks to test design and communication strategies.

We are participants in the Generation Study Evaluation led by UCL. Our work is focused on answering:

How prepared are patient organisations to support families taking part in genomic newborn screening?
What impact do patient organisations think genomic newborn screening will have on the families they support now and in the future?

Participants at the Generation Study Parliamentary Drop In session hosted by Liz Twist MP, January 2025

LifeArc Translational Centres for Rare Disease

As co-leads for patient and public involvement, policy, and communications workstreams, we:

Developed a PPIE strategy to guide involvement across multiple centres.
Facilitated knowledge-sharing between research teams and patient groups.
Helped shape policy messages to maximise the translational impact of rare condition research.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 15

International Engagement

Our involvement in the International Consortium on Newborn Sequencing (ICoNS) and Screen4Care ensured that UK patient perspectives were included in global discussions on newborn genomic sequencing and rare condition detection. We chaired a plenary session at the European Conference on Rare Diseases in Brussels on the topic of screening.

Why this matters

Embedding patient voice in research means better-designed studies, more relevant outcomes, and faster translation of findings into real-world benefits. Our work in 2024–25 has laid the groundwork for research that not only advances science but also meets the real needs of our community.

Membership and Partnerships

Our members are at the heart of everything we do. In 2024–25, we worked with more than 220 charities, support groups, and patient organisations across the UK, building connections, sharing resources, and delivering joint campaigns.

Our membership is as diverse as the community we serve. From large, UK-based charities with global reach to small, ultra-rare organisations run from kitchen tables, and everything in between. Each brings unique knowledge, priorities, and perspectives. We work to ensure that all of our members, regardless of size or resource, have a platform and a voice. This diversity strengthens our alliance and ensures that our work reflects the breadth of needs and experiences across the UK rare disease space.

Supporting and Connecting Members

Monthly Member Meetings – nine sessions with expert guest speakers covering topics from newborn screening to research with an average of 35 attendees per session.
We welcomed 17 new members to Genetic Alliance UK.
Co-branded resources – Provided templates and materials for our ‘Seeking a Rare Diagnosis’ guides, enabling smaller organisations to offer tailored information to their communities.
Campaign toolkits – Equipped members with materials for Rare Disease Day, including social media assets, exhibition resources, and template press releases.

Collaborating for Change

Partnered with Neurological Alliance, Specialised Healthcare Alliance, RareMinds, Beacon, Medics4RareDiseases on joint campaigns, events, and advocacy.
Worked with the Charity Medicines Access Coalition to improve equity in treatment availability.
Collaborated with LifeArc on translational research priorities and public involvement.

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Annual Report 2024-25 – Page 16

Strength in Partnership

These connections multiply our impact. By sharing expertise, pooling resources, and aligning messages, we ensure that the needs and priorities of people living with genetic, rare and undiagnosed conditions remain visible and high on the agenda.

SWAN UK – Supporting families without a diagnosis

SWAN UK (syndromes without a name) is the only dedicated support network in the UK for families of children and young adults with undiagnosed genetic conditions. In 2024–25, our work focused on rebuilding community connections, expanding reach, and delivering tailored information and support.

Strengthening community connections

Over the past year, we re-engaged families across England through in-person and online events:

Yorkshire Wildlife Park – 17 families joined a day of connection and shared understanding.
Worcester Snoezelen – An inclusive play and sensory centre where families felt welcomed and understood.
Dads’ Meet-up – Creating space for fathers to connect and share experiences.
Undiagnosed Children’s Day – Celebrating community and raising awareness nationwide.

“We absolutely loved it. Looking forward to another meet-up.” – Yorkshire Wildlife Park attendee

“There are so few places that make us feel welcome… it was really nice to feel understood.” – Worcester Snoezelen attendee

Sharing information and building confidence

Virtual information events – In partnership with Contact, we delivered three online sessions (plus two planned for July and October 2025) covering topics from benefits to navigating education support.
Primary school transitions workshop – 100% of attendees reported feeling better informed and more confident, with 75% feeling less isolated.
Parent Rep workshop – Strengthening the skills and connections of our volunteer representatives.

Developing professional resources

To improve support for families at the earliest stages:

Commissioned short films featuring a geneticist and a nurse, aimed at helping professionals understand the needs of undiagnosed families.
Designed an infographic for health visitors with practical tips for supporting children with suspected genetic conditions.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 17

Expanding our reach

We now support 160 individuals and 153 families, with 29% living in rural areas (up from 16%). Through targeted outreach, we were reaching communities previously underrepresented in our network.

We continue the work announced in our previous annual report to find the right long-term home for this crucially important network.

Future plans

As we move into the second year of our five-year strategy, our focus will be on building momentum and delivering even greater impact for the genetic, rare and undiagnosed community.

Our priorities for 2025–26

Renewing the UK Rare Diseases Framework
We will lead the call for a successor to the current Framework, ensuring that the priorities and commitments reflect the evolving needs of our community and build on lessons from the first phase.
Driving newborn screening reform Launching our UK newborn screening policy report and campaign, backed by international best practice and co-produced recommendations.
Improving diagnosis and care in the context of the 10 Year Health Plan for England Working with governments and NHS bodies to expand access to coordinated care, reduce diagnostic delays, and ensure equitable provision across all four nations.
Strengthening patient voice and supporting research Expanding the Patient Empowerment Group, supporting member organisations to participate in policy processes, and embedding lived experience in research and service design.
Consolidating the team
Augmenting our Senior Management Team structure by bringing in a Director of Engagement and Impact to oversee a strategic approach to membership and communications.
Being a better membership organisation
Building a more varied approach to working with our diverse membership to ensure we are truly serving them all as best we can.
Growing our reach and engagement
Extending our public campaigns, education work, and community resources so that more people know about rare conditions and how to support those affected.

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Annual Report 2024-25 – Page 18

Building sustainability
Diversifying our funding streams and developing partnerships that enable us to maintain and grow our impact for years to come.
Satisfying the needs of our stakeholders
Doing what we do best by ensuring those that need the expertise of our community can access it as directly as possible in the most suitable way to inform their work.

With the dedication of our members, the commitment of our partners, and the energy of our team, we are ready to take the next steps towards a future where no one with a rare condition feels invisible or unsupported.

Thank you to our supporters and funders

We raise funds for our vital work with and on behalf of members through individual giving, community fundraising, trusts and foundations, corporate supporters and legacies and in memory giving.

Thank you to all of the individuals and organisations who have supported our work this year. We are so grateful to everyone who has worked with us, volunteered or fundraised for us, or supported our work in other ways.

‘I think it's been an amazing day. It’s been lovely to raise so much money, it’s been lovely to spend the day with friends and have so much fun and it's been a lovely way to show our patients we are there for them in all manner of ways, not just in the clinic room.’ Participant in Ride for Rare

We wish to extend our thanks and gratitude to the families and friends who chose to remember their loved ones through a legacy or in memory donation to support our work during 2024/25.

We would also like to thank all of our funders who have given grants, sponsorship or donations to support our work this year. These organisations are listed here.

Alexion Amicus Therapeutics BioCryst Pharmaceuticals Biogen Chiesi Department of Health and Social Care Inthallo) Ipsen Janssen Jazz Pharmaceuticals

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Annual Report 2024-25 – Page 19

Johnson & Johnson Kyowa Kirin LifeArc Medical Research Council National Lottery Community Fund National Institute of Health and Research Novartis Orchard Therapeutics Pfizer PTC Therapeutics Rare Disease Research UK Robert Luff Foundation Roche Sanofi Scottish Government Takeda UCB University College London Vertex Wellcome Trust

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Annual Report 2024-25 – Page 20

Treasurer’s letter and financial review

Thank you to all our members, supporters and funders. You have ensured the work outlined in this report could continue during a time that continues to be very challenging for the charity and the people we support.

Review of the financial position

Income

The results for the year are set out in the statement of financial activities on page xx. The total income for the year was £885,853 (£780,935 in 2024).

This represents an overall increase of 13%, however, this was not experienced evenly across all sources of income. General fundraising remains challenging, which has emphasised the importance of our trust and foundation, corporate and government funders.

Expenditure

Total expenditure for the year was £705,016 (£862,752 in 2024).

This represents a 18% reduction on the prior year and reflects a continued focus on cost control. The mix of expenditure remained consistent over the period with policy work at 23% (36% in 2024), membership and engagement at 33% (37%), research at 32% (14%) and raising funds at 12% (13%), which means 88% (87%) of our spending is on charitable activities.

Surplus/deficit

Our final financial position for the year across all funds is a surplus of £180,837 (deficit of £81,817 in 2024).

This is comprised of a surplus of £160,593 on unrestricted funds and a surplus of £20,244 on restricted funds.

Reserves policy

Total reserves at the end of the financial year are £222,683 (£41,846 in 2024).

This is made up of restricted reserves of £32,378 (£12,134 in 2024) and unrestricted reserves of £190,305 (£29,712 in 2024).

The change in reserves is due to the in-year surpluses noted above.

Our unrestricted reserves represent more than six months of unrestricted expenditure and at the year end, and more than three months of unrestricted expenditure and restricted payroll. This meets the Trustees’ target to hold unrestricted reserves that equate to approximately six months of unrestricted expenditure.

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Annual Report 2024-25 – Page 21

The Board and Executive are clear that income generation and cost control measures need to continue to ensure that we can maintain and maximise our impact in the years ahead.

Conclusion

Genetic Alliance UK made big strides towards financial sustainability during 2024-25, which resulted in a solid financial performance. Adverse effects of continued challenges around fundraising were countered by careful planning and budgeting as well as an ongoing change management programme.

These circumstances resulted in unrestricted fund surplus compared to deficits for the previous two years. Unrestricted reserves (general and designated funds) stand at £190,305 as at 31 March 2025. The increase was as a result of the Trustees’ implementation of a change management programme focused on income generation, cost savings and reductions in headcount in 2024-25. This focus on keeping costs under control will continue into 2025-26.

The Trustees are mindful that they are likely to continue to operate in an environment of economic uncertainty and challenge and have reviewed budgets and forecasts for the next 12 months on that basis.

This work, informed by prudent assumptions and focused on ensuring financial sustainability, indicates that the charity will make a surplus in the year ending 31 March 2026 and that adequate liquid resources will continue to be available to fund activities.

Accordingly, the Trustees consider it appropriate for the charity to continue to adopt the going concern basis in preparing its financial statements.

Timothy Kamombo

Treasurer, Board of Trustees

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Annual Report 2024-25 – Page 22

Structure, governance and management

Constitution

Genetic Alliance UK is the trading name for Genetic Alliance UK Ltd, a registered charity and a company limited by guarantee, incorporated on 6 April 2006 and governed by its Memorandum and Articles of Association.

Appointment and training of Trustees

Nine trustees are elected by the membership, and three trustees are appointed by the Board in order to increase diversity. Members co-opted in year and new nominees must be proposed and seconded by a member. Trustee appointments are for three years, after which they are eligible for re-election for a further term of three years. After this they must retire unless they are elected to an officer post. New trustees must undertake an induction and are provided with an information pack detailing the charity’s work, governance, management policies and procedures, and potential conflicts of interest that may arise.

Governance and organisational management

Trustees held five Board meetings in the year ending 31 March 2025, where they reviewed the charity’s performance and determined and approved operating plans and budget.

During 2024/25 Trustees also held a Board Away Day to discuss leadership arrangements and implementation of our new five-year strategy which was launched at the charity’s Annual General Meeting in Autumn 2024.

Trustees delegate certain powers in connection with the charity’s management, remuneration (related to responsibility and market comparisons) and administration to the Finance and Governance (F&G) committee which met five times during 2024/25 and the People and Policies (P&P) committee which met three times during 2024/25.

The F&G committee provides detailed oversight and advice to the Board of Trustees in relation to financial management, financial viability, risk management and governance. The F&G committee has a minimum of three Trustee members, appointed from and by the Board of Trustees that includes the Treasurer (Chair of the Committee), Chair of Genetic Alliance UK, and the Deputy Chair. The Chief Executive and Directors of Genetic Alliance UK are ex officio.

The P&P committee oversees recruitment of trustees and senior staff, human resources policies, pay and reward, and policies on data protection, health and safety, safeguarding, and risk and compliance.

Risk management

Trustees have considered the major risks to which the charity is exposed and have established procedures including a risk register to identify and manage those risks. All risks are reviewed at each meeting of the Board of Trustees and by the F&G Committee.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 23

Even in the context of reserve growth seen in 2024-25, the principal risk facing the organisation remains ‘failure to achieve financial plan due to failure in one or more income streams’. Existing mitigation includes monthly cashflow and management information, prompt collection of debts, and work to diversify income streams.

Fundraising

2024/25 saw a transition from undertaking most of our fundraising activities in-house, to selective use of a consultant for the purpose of grant applications. The majority of fundraised income continues to be secured by the work of Genetic Alliance UK staff. Genetic Alliance UK is registered with the Fundraising Regulator and adheres to the codes of ethics laid out by the Fundraising Regulator and The Code of Fundraising practice in relation to all fundraising activities. The charity received no complaints about its fundraising practice in this financial year.

Working with the life-sciences industry

Genetic Alliance UK receives support from industry partners for projects that help us to deliver our charitable objectives. Our policy on working with industry sets out clear principles and guidance for how we work with the life-sciences industry.

Reference and administrative detail

Governing document

The charity is controlled by its governing document, Memorandum and Articles of Association, and constitutes a limited company, limited by guarantee, as defined in the Companies Act 2006.

Registered company number

05772999

Registered charity numbers

1114195 and SC039299

Registered office

The Clock Tower, 5 Farleigh Court, Old Weston Road, Flax Bourton, Bristol BS48 1UK

Postal address

3rd Floor, 86-90 Paul Street, London EC2A 4NE

Trustees

Ms Lara Bloom Ms Gloria Clark (Chair of People and Policy Committee) Ms Phillippa Farrant Mr Toby Hannam Miss Sara Hunt

Mr Timothy Kamombo (Treasurer and Chair of Finance and Governance Committee), co-opted January 2025

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 24

Mr Neil McClements, resigned September 2024

Mrs Sue Millman (Vice Chair)

Ms Rebecca Middleton, co-opted February 2025

Dr Shehla Mohammed

Mrs Elizabeth Porterfield MBE (Chair)

Mr David Ramsden (Treasurer and Chair of Finance and Governance Committee), until September 2024, and then co-opted until January 2025

Mr Greg Stevenson

Dr Sarah Wynn, until September 2024

Dr Mike Winter, co-opted February 2025

Board observer

Robin Nott

Chief Executive Officer

Nick Meade, Louise Fish, until July 2024, Mark Flannagan, between September 2024 and February 2025

Senior Management Team

Dr Amy Hunter, Nick Meade (as Director of Policy until February 2025, and as Interim Chief Executive from February 2025), Mary Edwards (until September 2024)

Auditors

Nyman Libson Paul Chartered Accountants, Regina House, 124 Finchley Road, London NW3 5JS

Management accountant

Fiona Bevan ACMA

Bankers

CAF Bank Ltd, 25 Kings Hill Avenue, Kings Hill, West Malling, Kent ME19 4JQ HSBC, Lion House, 25 Islington High Street, London N1 9LJ Virgin Money Saving, Jubilee House, Gosforth, Newcastle upon Tyne NE3 4PL

Website geneticalliance.org.uk Facebook GeneticAllianceUK X GeneticAll_UK Instagram GeneticAllianceUK LinkedIn Genetic Alliance UK

Trustee responsibility

The Trustees (who are also directors of Genetic Alliance UK Ltd for the purpose of company law) are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 25

Company law requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure of the charitable company for that period.

In preparing those financial statements, the trustees are required to:

Select suitable accounting policies and then apply them consistently.
Observe the methods and principles in the Charity SORP.
Make judgments and estimates that are reasonable and prudent.
Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in business.

The Trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charitable company and to enable them to ensure that the financial statements comply with the Companies Act 2006.

They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

In so far as the Trustees are aware:
There is no relevant audit information of which the charitable company’s auditors are unaware.
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.

Auditors

The auditors, Nyman Libson Paul Chartered Accountants, will be proposed for re-appointment at the forthcoming Annual General Meeting.

Report of the Trustees, incorporating a strategic report, approved by order of the Board of Trustees, as the company directors on 25 September 2025 and signed on the Board’s behalf by:

Elizabeth Porterfield MBE

Chair of the Board of Trustees

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 26

Independent Auditor’s Report to the Members of Genetic Alliance UK

Opinion

We have audited the financial statements of Genetic Alliance UK Ltd for the year ended 31 March 2025 set out on pages 32 to 48 which comprise the statement of financial activities, the balance sheet, the cash flow statement and the related notes, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

give a true and fair view of the state of the 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, the Charities and Trustees' Investment (Scotland) Act 2005 and regulations 6 and 8 of the Charities Accounts (Scotland) Regulations 2006 (amended).

Basis for opinion

We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor’s responsibilities for the audit of the financial statements section of our report. We are independent of the 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.

Conclusions relating to going concern

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

Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the 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.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 27

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

Other information

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

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

We have nothing to report in this regard.

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 for the financial year for which the financial statements are prepared is consistent with the financial statements; and
the directors’ report has been prepared in accordance with applicable legal requirements.

Matters on which we are required to report by exception

In the light of our 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 Report of the Board of Trustees and Accounts.

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 and the Charities Accounts (Scotland) Regulations 2006 require 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 directors’ 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’ exemption in preparing the Report of the Board of Trustees and Accounts.

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 28

Responsibilities of trustees

As explained more fully in the trustees’ responsibilities statement set out on pages 25 to 26 the trustees (who are also the directors of the charitable company for the purposes of company law) 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 alternative but to do so.

Auditor’s responsibilities for the audit of the financial statements

We have been appointed auditor under section 44(1)(c) of the Charities and Trustees Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with regulations made under those Acts.

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:

the nature of the industry and sector, control environment and business performance;
results of our enquiries of management about their own identification and assessment of the risks of irregularities;
any matters we identified having obtained and reviewed the Charity’s documentation of their policies and procedures relating to;
identifying, evaluating and complying with laws and regulations and whether they were aware of any instances of non-compliance;
detecting and responding to the risks of fraud and whether they have knowledge of any actual, suspected or alleged fraud;
the internal controls established to mitigate risks of fraud or non-compliance with laws and regulations;

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 29

the matters discussed among the audit engagement team regarding how and where fraud might occur;
the financial statements and any potential indicators of fraud.

As a result of these procedures, we considered the opportunities and incentives that may exist within the organisation for fraud and identified the greatest potential for fraud in relation to timing of income recognition. In common with all audits under ISAs (UK), we are also required to perform specific procedures to respond to the risk of management override.

We also obtained an understanding of the legal and regulatory frameworks that the Charity operates in, focusing on provisions of those laws and regulations that had a direct effect on the determination of material amounts and disclosures in the financial statements. The key laws and regulations we considered in this context included the UK Charities Act.

In addition, we considered other laws and regulations that could have an effect on the charity and result in the imposition of financial or other penalties and litigation. Auditing standards limit the required audit procedures to identify non-compliance with these laws and regulations to enquiry of the directors and other management and inspection of regulatory and legal correspondence, if any. These limited procedures did not identify actual or suspected noncompliance.

All matters in relation to non-compliance with laws and regulations and potential fraud risks were communicated to all members of the engagement team and we remained alert to any indications of non-compliance throughout the audit.

Our procedures to respond to risks identified included the following:

reviewing the financial statement disclosures and testing to supporting documentation to assess compliance with provisions of relevant laws and regulations described as having a direct effect on the financial statements;
enquiring of management concerning actual and potential litigation and claims;
assessing the appropriateness and where appropriate with third parties concerning actual and potential litigation and claims;
performing analytical procedures to identify any unusual or unexpected relationships that may indicate risks of material misstatement due to fraud;
in addressing the risk of fraud through management override of controls, reviewing the appropriateness of adjustments; assessing whether the judgements made in making accounting estimates are indicative of a potential bias; and evaluating the business rationale of any significant transactions that are unusual or outside the normal course of business.

We are not responsible for preventing non-compliance and cannot be expected to detect noncompliance with all laws and regulations.

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 the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 30

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 greater 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.uk/auditorsresponsibilities. This description forms part of our Auditors' 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 and to the charity's trustees, as a body, in accordance with Regulation 10 of the Charities Accounts (Scotland) Regulations 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.

Andrew Thomas (Senior statutory auditor) for and on behalf of

Nyman Libson Paul LLP Chartered Accountants Registered Auditors 124 Finchley Road London NW3 5JS

Date: 30 September 2025

Genetic Alliance UK ltd

Annual Report 2024-25 – Page 31

GENETIC ALLIANCE UK LTD

STATEMENT OF FINANCIAL ACTIVITIES (INCLUDING INCOME AND EXPENDITURE ACCOUNT) YEAR ENDED 31 MARCH 2025

Note Income from: Donations and legacies 2 Charitable activities 3 Investments Total income Expenditure on: Raising funds 4 Charitable activities 5 Total expenditure Net income/(expenditure) 8 Transfers between funds 18 Net movement in funds Total funds at start of year 18 Total funds at end of year 18	Unrestricted Funds £ 494,050 47,108 884 542,042 81,691 299,757 381,448 160,594 - 160,594 29,712 190,306	Restricted Funds £ 185,740 158,071 - 343,811 - 323,567 323,567 20,244 - 20,244 12,134 32,378	Total Funds 2025 £ 679,790 205,179 884 885,853 81,691 623,324 705,015 180,838 - 180,838 41,846 222,684	Total Funds 2024 £ 674,843 105,953 139 780,935 111,653 751,099 862,752 (81,817) - (81,817) 123,663 41,846

The Charity has no recognised gains or losses other than the results for the year as set out above.

All of the activities of the Charity are classed as continuing.

The notes on pages 34 to 48 form part of these financial statements See note 11 for fund-accounting comparative figures

Charity number: 1114195

GENETIC ALLIANCE UK LTD

BALANCE SHEET

AS AT 31 MARCH 2025

Company number: 05772999

Note Fixed assets Tangible assets 12	2025 2024 £ £ 2,911 5,634
Current assets Debtors 13 Cash at bank and in hand	2,911 5,634 16,843 101,901 395,134 87,665
Liabilities Creditors : amounts falling due within one year 14	411,977 189,566 (192,204) (153,354)
Net current assets	219,773 36,212
Total assets less current liabilities	219,773 36,212
Net assets	222,684 41,846
FUNDS Unrestricted funds General funds 19 Designated funds 19 Restricted funds 19	190,306 29,712 - - 32,378 12,134
Total funds	222,684 41,846

These financial statements have been prepared in accordance with the special provisions for small companies under Part 15 of the Companies Act 2006.

These financial statements were approved by the Trustees on 25 September 2025 and are signed on their behalf by:

Elizabeth Porterfield, MBE Chair of Trustees

The notes on pages 34 to 48 form part of these financial statements

GENETIC ALLIANCE UK LTD

CASH FLOW STATEMENT

YEAR ENDED 31 MARCH 2025

Note Net cash inflow/(outflow) from operating activitie 15 Non-operational cash flows: Investing activities Payments for tangible fixed assets Investment income Net cash inflow/(outflow) from investing activities Net cash inflow/(outflow) for the year 16 Cashflow Restrictions	2025 £ 306,585 - 884 884 307,469	2024 £ (52,632) (3,381) 139 (3,242) (55,874)

Charity law prohibits the use of net cash inflows on any endowed or other restricted fund to offset net cash outflows on any fund outside its own objects, except on special authority. In practice, this restriction has not had any effect on cash flows for the year.

The notes on pages 34 to 48 form part of these financial statements

GENETIC ALLIANCE UK LTD NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

1 Accounting policies

Accounting convention

The financial statements have been prepared in accordance with the historical cost convention (except for investments which have been included at fair value) and in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) issued in October 2019 and the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 and UK Generally Accepted Practice as it applies from 1 January 2019.

The Charity is a public benefit entity as defined under FRS102.

Going concern

Like many Charities, in 2023/24 Genetic Alliance UK faced a challenging environment in with financial volatility and the cost of living crisis depressing charitable donations and placing inflationary pressure on costs. The timing of this challenge enabled the Charity to work throughout 2024-25 to mitigate the impact of these continuing economic challenges and saw some positive results of the change management programme instigated in 2023-24. Further measures confirmed in Q1 of 2024/25 allowed the Charity to build stability by further reducing the size of the team while growing its reserves.

The result of these changes meant unrestricted fund surplus for the year of £160K compared to a deficit for the previous year of c £63k. Unrestricted free reserves (general and designated funds less fixed assets) stand at approximately £187k as at 31 March 2025 compared to c £24k in the previous year.

The Trustees are mindful that the Charity continues to operate in an environment of economic uncertainty and challenge and have reviewed budgets and forecasts for the next 12 months on that basis.

This work, informed by prudent assumptions and focused on ensuring financial sustainability and rebuilding reserves, indicates that the Charity will make a surplus in the year ending 31 March 2026 and that adequate liquid resources will continue to be available to fund activities.

Accordingly, the Trustees consider it appropriate for the Charity to continue to adopt the going concern basis in preparing its financial statements.

Income

Income from donations is included in income when these are receivable, except as follows:

I. When donors specify that donations given to the Charity must be used in future accounting periods, the income is deferred until those periods; II. When donors impose conditions which have to be fulfilled before the Charity becomes entitled to use such income, the income is deferred until the pre-conditions have been met.

Grants, including government grants are accounted for as receivable and are allocated to Income from Donations and Legacies. Other grants which are received subject to the Charity providing a specific level of service are included within Income from Charitable Activities.

Membership income is included on a receivable basis.

Investment income is included on a receivable basis.

Donations in kind comprise donated services where the costs are measurable and the services would otherwise have to be paid for to maintain operational effectiveness.

GENETIC ALLIANCE UK LTD NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

1 Accounting policies (continued)

Expenditure

Expenditure is recognised in the period in which it is incurred. Expenditure includes attributable VAT which cannot be recovered.

Raising funds

Raising funds expenditure include those costs incurred in seeking voluntary contributions and other costs which include the costs of running and participating in fundraising events and collections.

Charitable Activities

Grants awarded are allocated to charitable activities.

Grants awarded are treated as expenditure and a liability in the accounts as soon as they become legal or constructive obligations. In the case of multi-year grant awards, the funding for all years is immediately recognised unless there are conditions which need to be met by the recipient to enable the release of subsequent years’ funding.

Governance costs

Governance costs include those costs associated with meeting the constitutional and statutory requirements of the Charity and include the audit fees and costs linked to the strategic management of the Charity. Governance costs are included within support costs.

Allocation and apportionment costs

Certain expenditure is directly attributable to specific activities and this has been included in those cost categories. Other costs, which are attributable to more than one category, are apportioned across cost categories on the basis of an assessment of workload carried out from time to time.

Overhead support costs have been allocated between fundraising and charitable activities. The apportionment has been allocated on the basis of usage and is analysed in note 6.

Redundancy costs

The Charity recognises redundancy costs at the point at which the redundancy has been confirmed and communicated to the individual. The costs are allocated to the same activity as the member of staff was engaged in.

Pension costs and other post-retirement benefits

The Charity contributes to defined contribution pension schemes. Contributions payable to the Charity's pension schemes are charged to the Statement of Financial Activities in the period to which they relate.

Fixed assets

Fixed assets are held at cost less accumulated depreciation. Assets costing less than £500 are not capitalised.

Depreciation is charged on assets at the following rates:

Office equipment - 3 years straight line

Debtors

Debtors are initially measured at the settlement amount after any trade discounts. Subsequently they are measured at the value of the consideration expected to be received.

GENETIC ALLIANCE UK LTD NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

1 Accounting policies (continued)

Cash

Cash balances represent cash and cash equivalents held with a maturity date of less than three months and are included at fair value.

Creditors

Creditors are measured at the settlement amount less any trade discounts.

Fund accounting

Unrestricted funds can be used in accordance with the charitable objects at the discretion of the trustees.

Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.

Designated funds form part of unrestricted funds and have been identified as being for particular purposes by the Trustees. They are not restricted and can be transferred to general funds at any time at the discretion of the Trustees.

Further explanation of the nature and purpose of each fund is included in note 18 to the financial statements.

2 Income from donations and legacies

Donations from supporters Legacies received Robert Luff Trust Wellcome Trust Grants from Government National Lottery funding Scottish Government Other grants received Donations through fundraising: Online donations	Unrestricted Funds £ 439,121 8,227 - - - - 4,000 42,702 494,050	Restricted Funds £ 18,385 - 20,000 5,000 97,078 40,000 - 5,277 185,740	Total Funds 2025 £ 457,506 8,227 20,000 5,000 97,078 40,000 4,000 47,979 679,790

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

2 Income from donations and legacies (continued)

Prior year

Donations from supporters Legacies received Robert Luff Trust Wellcome Trust Great Ormond Street Hospital Grants from Government National Lottery funding Scottish Government Other grants received Donations through fundraising: Online donations	Unrestricted Funds £ 399,279 208 - - - - - 3,000 49,711 452,198	Restricted Funds £ 58,778 - 20,000 50,000 10,324 67,693 9,950 5,900 - 222,645	Total Funds 2024 £ 458,057 208 20,000 50,000 10,324 67,693 9,950 8,900 49,711 674,843

3 Income from: Charitable activities

Consultancy work Prior year Consultancy work	Unrestricted Funds £ 47,108 47,108 Unrestricted Funds £ 55,885 55,885	Restricted Funds £ 158,071 158,071 Restricted Funds £ 50,068 50,068	Total Funds 2025 £ 205,179 205,179 Total Funds 2024 £ 105,953 105,953

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

4 Expenditure on: Raising funds

Staff costs, including consultancy work Fees Other direct costs Support costs (Note 6)	Total Funds 2025 £ 74,673 3,816 - 3,202 81,691	Total Funds 2024 £ 106,009 2,083 6 3,555 111,653

During both the current and prior year, fundraising expenses have been incurred by unrestricted funds.

5 Expenditure on: Charitable activities

Membership and Engagement Policy work Research Prior year Membership and Engagement Policy work Research	Direct Costs £ 145,357 111,211 119,045 375,613 Direct Costs £ 184,486 151,707 61,856 398,049	Support Costs (Note 6) £ 88,032 52,025 107,654 247,711 Support Costs (Note 6) £ 136,136 160,271 56,643 353,050	Total Funds 2025 £ 233,389 163,236 226,699 623,324 Total Funds 2024 £ 320,622 311,978 118,499 751,099

£201,996 of the above support costs in notes 4 and 5 and £179,452 of direct costs relate to unrestricted funds spent during the year. £48,917 of support costs and £274,650 of direct costs relate to restricted funds spent during the year.

£294,885 of the above support costs in notes 4 and 5 and £270,039 of direct costs relate to unrestricted funds spent during the prior year. £61,230 of support costs and £236,111 of direct costs relate to restricted funds spent during the prior year.

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

6 Support costs

Support costs are allocated between raising funds and charitable activities on the basis of usage. Support costs, included in notes 4 & 5, are as follows:

Staff costs Communications Office and admin costs Travel Finance costs Professional fees Governance costs (Note 7) Prior year Staff costs Communications Office and admin costs Travel Finance costs Professional fees Governance costs (Note 7)	Raising Funds £ - - 3,202 - - - - 3,202 Raising Funds £ - - 3,555 - - - - 3,555	Charitable Activities £ 141,285 3,799 23,068 9,762 2,129 53,268 14,400 247,711 Charitable Activities £ 206,350 2,187 70,162 10,634 1,568 48,109 14,040 353,050	Total 2025 £ 141,285 3,799 26,270 9,762 2,129 53,268 14,400 250,913 Total 2024 £ 206,350 2,187 73,717 10,634 1,568 48,109 14,040 356,605

7 Governance costs

Auditor's fees - for audit services Accounts review	Total Funds 2025 £ 11,400 3,000 14,400	Total Funds 2024 £ 10,800 3,240 14,040

GENETIC ALLIANCE UK LTD NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

8 Net income/(expenditure) for the year

This is stated after charging:

----- Start of picture text -----
||||| |---|---|---|---| |2025|2024| |£|£| |Auditor's remuneration|- for audit services|11,400|10,800| |Trustees travel and subsistence expenses (9 Trustees, 2024: 4 Trustees)|2,974|2,419| |Depreciation|2,723|2,445|

----- End of picture text -----

No Trustee received any remuneration in the current or prior year.

9 Staff costs and numbers

The aggregate payroll costs were:

----- Start of picture text -----
|||| |---|---|---| |2025|2024| |£|£| |Wages & salaries|452,086|577,413| |Social security costs|42,080|57,823| |Pension contributions|25,067|33,371| |Redundancy costs (2 employees)|4,064|3,635| |523,297|672,242|

----- End of picture text -----

The number of employees whose employee benefits exceeded £60,000 during the year were:

Between £60,000 and £70,000

----- Start of picture text -----
||| |---|---| |2025|2024| |1|1|

----- End of picture text -----

The average weekly number of employees during the year was 11 (2024: 17), calculated on the basis of average headcount. The total employment benefits received by key management personnel including employer's national insurance and employer's pension contributions were £175,330 (2024: £236,405). There were no outstanding redundancy costs due at the end of the year.

10 Taxation

The Charity is exempt from corporation tax on its charitable activities.

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

----- Start of picture text -----
11 Statement of Financial Activities comparative figures
Unrestricted Restricted Total Funds
For the year ended 31 March 2024 Funds Funds 2024
£ £ £
Income from:
Donations and legacies 452,198 222,645 674,843
Charitable activities 55,885 50,068 105,953
Investments 139 - 139
Total income 508,222 272,713 780,935
Expenditure on:
-
Raising funds 111,653 111,653
Charitable activities 453,758 297,341 751,099
Total expenditure 565,411 297,341 862,752
Net income/(expenditure) (57,189) (24,628) (81,817)
Transfers between funds (6,073) 6,073 -
Net movement in funds (63,262) (18,555) (81,817)
Total funds at start of year 92,974 30,689 123,663
Total funds at end of year 29,712 12,134 41,846
----- End of picture text -----

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

12 Tangible fixed assets Asset Category 1 Asset Category 2 £ £ Cost or valuation At 1 April 2024 - - Additions - - At 31 March 2025 - - Depreciation At 1 April 2024 - - Charge for the year - - At 31 March 2025 - - Net book value At 31 March 2025 - - At 31 March 2024 - - 13 Debtors Due in less than one year: Trade debtors Prepayments and accrued income Other debtors 14 Creditors: amounts falling due within one year Trade creditors Social security and other taxes Other creditors Accruals and deferred income	Office equipment £ 9,027 - 9,027 3,393 2,723 6,116 2,911 5,634 2025 £ 11,505 5,338 - 16,843 2025 £ 11,597 9,860 3,652 167,095 192,204	Total £ 9,027 - 9,027 3,393 2,723 6,116 2,911 5,634 2024 £ 97,724 3,517 660 101,901 2024 £ 4,700 38,685 6,862 103,107 153,354

GENETIC ALLIANCE UK LTD NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

15 Reconciliation of net movement in funds to net cash inflow from operating activities

Statement of Financial Activities: Net movement in funds Depreciation Increase in creditors: current liabilities Decrease / (increase) in debtors Investment income Net cash inflow/(outflow) from operating activities	2025 £ 180,838 2,723 38,850 85,058 (884) 306,585	2024 £ (81,817) 2,445 75,412 (48,533) (139) (52,632)

16 Analysis of changes in cash during the year

Cash at bank and in hand Cash at bank and in hand	2025 £ 395,134 2024 £ 87,665	2024 £ 87,665 2023 £ 141,457	Change £ 307,469 Change £ (53,792)

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

----- Start of picture text -----
17 Analysis of changes in net debt
1 April Cashflow 31 March
2024 Movements 2025
£ £ £
Cash at bank and in hand 87,665 307,469 395,134
87,665 307,469 395,134
Prior year 1 April Cashflow 31 March
2023 Movements 2024
£ £ £
Cash at bank and in hand 141,457 (53,792) 87,665
141,457 (53,792) 87,665
----- End of picture text -----

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

18 Movement in Funds

For the year ended 31 March 2025

Restricted funds ARDAT Concorde 2 DHSC Generation evaluation Captivate How decisions are made in Scotland LifeArc RD-TAPP LifeArc working groups Node Zhou Node Billingham SWAN UK National lottery Wellcome 2023/25 Robert Luff Trust NHS Scotland Seeking a Rare Diagnosis Rapid Genome Sequencing Unrestricted funds General funds Designated funds Rare Disease Day Rare Disease UK General Donations Total funds	At 1 April 2024 £ - - - (91) (1,684) - - - - - 13,909 - - - - - 12,134 29,712 - - 29,712 41,846	Income £ 4,673 25,694 30,000 24,579 18,315 20,000 966 16,931 2,098 6,496 103,963 5,000 8,656 11,177 65,000 263 343,811 175,551 92,210 274,281 542,042 885,853	Expenditure £ (4,673) (25,694) (30,000) (24,488) (16,631) (20,000) (966) (16,931) (2,098) (6,496) (85,494) (5,000) (8,656) (11,177) (65,000) (263) (323,567) (205,683) (92,210) (83,555) (381,448) (705,015)	Transfers £ - - - - - - - - - - - - - - - - - 190,726 - (190,726) - -	At 31 March 2025 £ - - - - - - - - - - 32,378 - - - - - 32,378 190,306 - - 190,306 222,684

Fund descriptions

Restricted funds

ARDAT - funds received to support a project on Accelerating Research and Development for Advanced Therapies.

Concord 2 - funds received for research on coordination of care in the UK and dissemination of findings. Department of Health and Social Care (DHSC) - funds received to support and inform the rare disease team in the DHSC on the views of the rare disease community.

GENETIC ALLIANCE UK LTD NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

18 Movement in funds (continued)

Generation Evaluation - funds received to support evaluation of parent experiences in the pilot 'Generation Study' run by Genomics England.

CAPTIVATE - funds received to support a Rare Disease Research UK Hub node on Changing Clinical Practice Through Innovative Trial Design (CAPTIVATE).

How Decisions are Made in Scotland - funds received to explain healthcare decision-making on newborn screening, genetic services, access to medicines and service commissioning.

LifeArc RD-TAP - funds received to support the LifeArc Centre for Acceleration of Rare Disease Trials. LifeArc working groups - funds received to support the policy, PPIE and comms working groups linked to the Centres.

Node Zhou - funds received to support RDRUK node research into UK Platform of Nucleic Acid Therapy (UPNAT).

Node Billingham - funds received to support RDRUK node research into Changing Clinical Practice Through Innovative Trial Design (CAPTIVATE).

SWAN UK England National Lottery fund - funds received to strengthen our support for families affected by undiagnosed genetic conditions in England.

Wellcome 23-25 - funding received from the Wellcome Trust for strategy development, implementation of a quality and diversity review and fundraising support.

Robert Luff trust - funds received from the trust for undertaking research.

NHS Scotland - funds received to advance work related to priority two of the UK Rare Disease Framework (Raising awareness with health professionals) across NHS Scotland. (previously Scotland Boost).

Seeking a Rare Diagnosis - funds received to develop and launch a suite of information to support individuals and families seeking a diagnosis for a rare condition.

Rapid Genome Sequencing - funds received for research into the Rapid genome sequencing for the diagnosis of critically ill children in the NHS Genomic Medicine service: Ensuring an equitable and effective parent and patient-centred service.

Community Ask 2023 - funds received to develop and launch a new unified website for Genetic Alliance UK, Rare Disease UK and SWAN UK.

Genomics England accessible information - funds received to develop a toolkit helping charities and support groups to develop accessible information about genetic conditions.

RD Research Hub - funds received to deliver the Rare Disease Research UK Hub in partnership with Newcastle University and The Newcastle upon Tyne Hospitals NHS Foundation Trust.

SWAN UK Wales - funds received for the development of a support network in Wales for families with children affected by undiagnosed genetic conditions.

Robert Luff Rare experience/SWAN Couples - funds received from the trust for undertaking research relating to SWAN Couples counselling.

Alex TLC X-ALD study - funds received to participate in the Alex TLC X-ALD study .

ATMP - funding received to assist with the Cell and Gene Therapy Catapult at Guys' Hospital . SWAN UK Scotland - funds received for outreach in Scotland.

Designated funds

Rare Disease Day - funds were set aside by the trustees in previous years to support awareness of rare conditions. During the current year, it was decided that there was no longer any need for the funds to be separated, so the balance remaining has been transferred back to general funds.

GENETIC ALLIANCE UK LTD NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

18 Movement in funds (continued)

Rare Disease UK General Donations - national campaign for people with rare diseases and all who support them, providing a united voice for the rare disease community by capturing the experiences of patients and families. Rare Disease UK is focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.

SWAN UK General Donations - the trustees have set aside these funds received as general donations to SWAN UK, to ensure they are spent on activities within the SWAN UK community.

For the year ended 31 March 2024

Restricted funds ARDAT Community Ask 2023 Genomics England accessible information Generation evaluation Captivate RD Research hub SWAN UK Wales SWAN UK National lottery Wellcome 2023/25 Robert Luff Rare Experience Robert Luff SWAN Couples Robert Luff Trust NHS Scotland Alex TLC X-ALD study Rapid Genome Sequencing ATMP Unrestricted funds General funds Designated funds Rare Disease Day Rare Disease UK General Donations SWAN UK: General Donations Total funds	At 1 April 2023 £ - - - - - - 22,012 - - - - - - - 8,677 - 30,689 46,040 - 15,441 31,493 92,974 123,663	Income £ 6,772 85,850 2,613 4,152 - 13,717 14,313 53,380 50,000 4,311 7,908 7,781 8,773 2,819 10,324 - 272,713 169,099 100,135 209,747 29,241 508,222 780,935	Expenditure £ (6,772) (85,850) (2,613) (4,243) (1,684) (13,717) (39,074) (39,471) (50,000) (4,311) (7,908) (7,781) (8,803) (2,819) (19,001) (3,294) (297,341) (179,319) (100,170) (225,188) (60,734) (565,411) (862,752)	Transfers £ - - - - - - 2,749 - - - - - 30 - - 3,294 6,073 (6,108) 35 - - (6,073) -	At 31 March 2024 £ - - - (91) (1,684) - - 13,909 - - - - - - 12,134 29,712 - - - 29,712 41,846 -

GENETIC ALLIANCE UK LTD

NOTES TO THE FINANCIAL STATEMENTS

YEAR ENDED 31 MARCH 2025

19 Analysis of net assets between funds

As at 31 March 2025 Tangible fixed assets Bank and cash Other net assets As at 31 March 2024 Tangible fixed assets Bank and cash Other net assets	Restricted Funds £ - 32,378 - 32,378 Restricted Funds £ - 12,134 - 12,134	Unrestricted Designated Funds £ - - - - Unrestricted Designated Funds £ - - - -	Unrestricted General Funds £ 2,911 361,750 (174,355) 190,306 Unrestricted General Funds £ 5,634 75,531 (51,453) 29,712	Total £ 2,911 394,128 (174,355) 222,684 Total £ 5,634 87,665 (51,453) 41,846

20 Related party transactions

There are no transactions with trustees or other related parties other than those disclosed as required by the SORP elsewhere in the financial statements. No balances were due to or from related parties at the

Genetic Alliance UK – contactus@geneticalliance.org.uk – geneticalliance.org.uk Registered charity numbers: 1114195 and SC039299 Registered company number: 05772999

GENETIC ALLIANCE UK ltd

Report of the Board of Trustees

For the year ended 31 March 2025

Contents

Welcome from the Chair

Elizabeth Porterfield, MBE

Genetic, Rare and Undiagnosed Conditions in numbers

Objective and Aims

Genetic Alliance UK’s Strategy 2024-29

Highlights and Impact 2024–25

Influenced policy at the highest level

Delivered high-profile campaigns

Strengthened patient voice

Produced practical resources

Advanced research and innovation

Engaged the public

Built stronger partnerships

Patient Voice at the Centre

Expanding our influence

Shaping national frameworks

Ensuring representation in key policy areas

Building capacity and connection

Campaigns and Advocacy

Rare Disease UK

Rare Disease Day 2025 – ‘More than you can imagine’

Shaping National and Devolved Policy

International Collaboration

Research and Innovation

Newborn Screening: International Review

Generation Study

LifeArc Translational Centres for Rare Disease

International Engagement

Why this matters

Membership and Partnerships

Supporting and Connecting Members

Collaborating for Change

Strength in Partnership

SWAN UK – Supporting families without a diagnosis

Strengthening community connections

Sharing information and building confidence

Developing professional resources

Expanding our reach

Future plans

Our priorities for 2025–26

Thank you to our supporters and funders

Treasurer’s letter and financial review

Review of the financial position

Income

Expenditure

Surplus/deficit

Reserves policy

Conclusion

Timothy Kamombo

Structure, governance and management

Constitution

Appointment and training of Trustees

Governance and organisational management

Risk management

Fundraising

Working with the life-sciences industry

Reference and administrative detail

Governing document

Registered company number

Registered charity numbers

Registered office

Postal address

Trustees

Board observer

Chief Executive Officer

Senior Management Team

Auditors

Management accountant

Bankers

Trustee responsibility

Auditors

Elizabeth Porterfield MBE

Independent Auditor’s Report to the Members of Genetic Alliance UK

Opinion

Basis for opinion