Charity registration number: 1206192
FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Annual Report and Financial Statements
for the period from 14 December 2023 to 31 December 2024
FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Contents (continued)
| Reference and Administrative Details | 1 |
|---|---|
| Trustees' Report | 2 to 11 |
| Statement of Trustees' Responsibilities | 12 |
| Independent Examiner's Report | 13 |
| Statement of Financial Activities | 14 |
| Balance Sheet | 15 |
| Cash Flow Statement | 16 |
| Notes to the Financial Statements | 17 to 20 |
FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Reference and Administrative Details
Trustees Dr Jonathan Hyer Dr Stephen Hyer Mr Justin Hyer Senior Management / Leadership Dr Jonathan Hyer, Trustee Team Dr Stephen Hyer, Trustee Mr Justin Hyer, Trustee Charity Registration Number 1206192 Principal Office 5 Brayford Square London E1 0SG Independent Examiner Simon Mannings Chartered Accountant 226 Battersea Park Road London SW11 4ND
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FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Trustees' Report
December 2024.
1. Objec)ves and Ac)vi)es
The FoundaAon to Overcome Rare GeneAc Errors was established with the charitable purpose of preserving and protecAng the good health for the public benefit by providing grants to support research into rare geneAc disorders, parAcularly, though not exclusively, childhood autoinflammatory condiAons.
The charity aims to:
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Support research to correct gene errors causing disease.
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Develop beNer methods of monitoring disease acAvity.
operaAonal structures, engaging expert collaborators, developing partnerships, and iniAaAng early fundraising and outreach acAviAes.
2. Achievements and Performance
Establishing Founda)ons
This inaugural year has been instrumental in building the operaAonal framework of the charity and creaAng the foundaAons needed to achieve its charitable objecAves.
The Trustees have also gained valuable insight into the global landscape of rare geneAc diseases, enabling a deeper understanding of the needs of those affected and the opportuniAes for research and advocacy.
compassionate care for families. Rare geneAc disorders, oRen referred to as ‘orphan diseases,’ affect only a small proporAon of the populaAon and are frequently overlooked by mainstream healthcare and research systems. FORGE is determined to change that.
3. Engaging with Leading Experts and Researchers
engagement with leading internaAonal experts and research insAtuAons. Establishing these connecAons has been a key element of our first year’s acAvity, ensuring that the charity’s future iniAaAves are informed by the most advanced global experAse in immunology, geneAcs, and rare disease research.
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Trustees' Report (con<nued)
during 2024 with a wide network of internaAonal experts and researchers working across fields relevant to rare geneAc condiAons. These relaAonships have begun to establish the foundaAon for future collaboraAon, knowledge exchange, and joint research iniAaAves. Where lists have been produced, they are arranged in alphabeAcal order.
United States
FORGE has developed connecAons with several leading insAtuAons in the United States that are at the forefront of research into immunology, geneAcs, and paediatric medicine:
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Na)onal Ins)tute of Allergy and Infec)ous Diseases , Bethesda, Maryland
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Stanford University , InsAtute for Stem Cell Biology and RegeneraAve Medicine, California
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Stanford Medicine , Division of Paediatric Haematology, Oncology, Stem Cell, TransplantaAon and RegeneraAve Medicine, California
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University of Pennsylvania , InsAtute for Immunology and Immune Health, Philadelphia
United Kingdom
Our UK collaboraAons span major centres of excellence in paediatric and immunological research, strengthening our links with naAonal academic and clinical partners:
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Great Ormond Street Hospital for Children NHS Founda)on Trust , Department of Paediatric Rheumatology, London
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Imperial College London of Public Health, London
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Ins)tute of Gene)cs and Cancer , The University of Edinburgh, Scotland.
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Na)onal Heart and Lung Ins)tute , Imperial College London
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Royal Brompton Hospital, Departments of Paediatric Respirology and Adult Respiratory Medicine, London
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UCL Great Ormond Street Ins)tute of Child Health London
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University College London
Australia
Recognising the strong research environment in Australia, FORGE has engaged with leading insAtutes and clinicians across Melbourne, Brisbane, and Sydney:
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Centre for Child Health Research and Innova)on , University of New South Wales
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Hudson Ins)tute of Medical Research
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Monash Health , Clinical GeneAcs, Melbourne
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Murdoch Children's Research Ins)tute , Melbourne
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Queensland University of Technology , School of Biomedical Sciences, Brisbane
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Royal Children’s Hospital , Departments of Allergy and Immunology, Rheumatology, Respiratory Medicine and GeneAcs, Melbourne
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Walter and Eliza Hall Ins)tute
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Trustees' Report (con<nued)
Other Interna)onal Research Centres
FORGE has also iniAated dialogue with leading internaAonal experts and centres of excellence across Europe, including:
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Hôpital Necker–Enfants Malades , Service d’Immuno-Hématologie et Rhumatologie Pédiatriques, Paris, France
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IMAGINE – Ins)tut des Maladies Géné)ques
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Karolinska Ins)tutet , Department of Women’s and Children’s Health, Stockholm, Sweden
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University Children’s Hospital Ljubljana , Department for Paediatrics, Slovenia
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University Hospital Münster , SecAon of Rheumatology and Clinical Immunology, Münster, Germany
These engagements collecAvely represent a growing global network of clinicians and scienAsts who share our commitment to advancing the understanding, diagnosis, and treatment of rare geneAc diseases. This developing network will underpin future collaboraAve projects, knowledge sharing, and opportuniAes to direct funding towards high-impact research iniAaAves that align with FORGE’s mission.
4. Ini)a)ng Collabora)ons with Leading Organisa)ons
As part of our wider strategic development, the Trustees have acAvely sought to build partnerships with organisaAons that share FORGE’s vision for innovaAon, research, and paAent advocacy. These early-stage collaboraAons are designed to idenAfy opportuniAes for joint projects, shared learning, and collecAve impact across the rare disease landscape.
Research and Academic Partners
FORGE has established contact with a range of academic and research networks commiNed to advancing understanding of rare geneAc and autoinflammatory diseases.
Key engagements include:
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Imperial College London which ranks top in the UK overall for research, with a greater proporAon of world-leading research than any other UK University.
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Interna)onal Consor)um on Newborn Screening , a global iniAaAve working to harmonise and advance newborn screening programmes for early detecAon of geneAc and metabolic disorders.
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Genomics England , a government-owned organisaAon supporAng genomic research and its integraAon into healthcare.
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Transla)onal Autoimmune Research Network , an internaAonal collaboraAve network dedicated to advancing translaAonal research in autoimmune and autoinflammatory condiAons.
These connecAons are helping to idenAfy areas of shared research interest and future collaboraAon that will contribute directly to improved diagnosAc and therapeuAc outcomes.
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Trustees' Report (con<nued)
Pharmaceu)cal and Industry Partners
FORGE has also begun dialogue with researchers and industry representa;ves focused on transla;onal science, biotechnology, and therapeu;c development.
Engagements to date have included:
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Alnylam Pharmaceu)cals , United States
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Ilya Pharma , Sweden
view to suppor;ng research that can translate into real-world treatments for rare gene;c condi;ons.
Charitable and Advocacy Organisa)ons
Recognising the vital role of the charitable and advocacy sector in driving awareness and pa;ent support, FORGE has developed rela;onships with peer organisa;ons whose missions align closely with our own.
Key partnerships and engagements have included:
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Childhood Inters))al Lung Disease UK
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Gene)c Alliance UK
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Juvenile Arthri)s Founda)on Australia
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Rare Voices Australia
coordinated advocacy for improved access to research, informa;on, and care.
Professional and Opera)onal Support
reduced or pro bono consultancy in key opera;onal areas.
Contributors include:
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Alex Hayes , The Na'onal Lo,ery Community Fund , fundraising
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Baker McKenzie LLP , legal
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Ecovia , opera;onal
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Fusion Pharma , regulatory
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Giselle Okin , Opinionated Thinking , brand strategy
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Hatched , website design
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Hussein Al-Mossawi , AstraZeneca , research
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Janita Patel & Alex Bryne , branding and graphic design
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Jen Kay , social media
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Trustees' Report (con<nued)
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Fezzan Ahmed , Jigsaw House Society , philanthropy and strategy
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Laura Sands , copywriAng
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Paul McKenzie , Giant Steps Fundraising Consultancy , fundraising and strategy
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Rob Hare Design , graphic design and branding
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Roger Brooks , University of Cambridge , research
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Roya Haghighat-Khah , MedAccel , research and regulatory
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Sophie Spencer Wood , image ediAng
Their contribuAons have been invaluable in guiding governance, communicaAons, design, and strategic planning, helping to posiAon FORGE for long-term impact. These collaboraAons reflect the strong early foundaAons of FORGE’s partnership strategy. By engaging leading organisaAons across academia, industry, and the charitable sector, we are building a robust framework for future joint iniAaAves that will accelerate research, strengthen advocacy, and enhance outcomes for families affected by rare geneAc disorders.
5. Enhancing Online Presence and Technological Capabili)es
effecAve online presence. A strong digital framework is essenAal for connecAng with beneficiaries, supporters, and collaborators, and for ensuring the charity’s acAviAes are accessible to a global audience.
Website and Digital Infrastructure
With pro bono support, FORGE launched an iniAal holding website, incorporaAng a donaAon plaform powered by Stripe. This provided an early digital presence for informaAon sharing and donor engagement.
acAviAes and partnerships. A team of professionals and volunteers contributed to this project, providing support across:
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Content development and copywriAng
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Social media setup and integraAon
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Image sourcing and visual branding
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Graphic design, logo development, and professional web design
research prioriAes, and fundraising acAviAes.
Networking and Informa)on Resources
directory of experts in gene ediAng and interferonopathies. This resource now supports the charity’s developing scienAfic network and has enhanced our ability to idenAfy and engage with relevant research leaders worldwide.
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Trustees' Report (con<nued)
Communica)ons and Outreach
Through the creaAon of a digital communicaAons framework, FORGE is now posiAoned to engage its community more effecAvely. These developments have enabled the Trustees to share updates, research progress, and paAentfocused informaAon in a Amely and accessible way.
These early technological and communicaAon developments represent an important investment in FORGE’s capacity to connect, inform, and engage. Our enhanced online presence not only supports fundraising and collaboraAon but also reinforces our commitment to transparency, accessibility, and the disseminaAon of knowledge within the rare disease community.
6. Fundraising and Volunteer Recruitment
and volunteer engagement. These acAviAes have not only provided iniAal financial contribuAons but have also helped to establish a sense of shared ownership and parAcipaAon among those who believe in the charity’s mission.
Community Fundraising Events
and essenAal funds to support our charitable objecAves:
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Charity BBQ and Musical Recital (August 2023, pre-incorporaAon)
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Family Fun Day (September 2024)
These events provided valuable early resources and created opportuniAes to connect directly with supporters, fostering community spirit around the charity’s aims.
Volunteer Recruitment and Contribu)ons
Dr Roger Brooks and Dr Roya Haghighat-Khah , have provided expert insight and ongoing clinical guidance.
AddiAonal volunteer support was provided by Rathna Pillai , Shaila Bates , Rhys Bates , Kothanayagi Brodbeck , and Sheryl Moore , who have played key roles in coordinaAng fundraising events and community engagement iniAaAves.
A workplace meal service established by Krishna Hyer has also been running successfully for six months, generaAng regular contribuAons while promoAng awareness of FORGE’s mission.
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Trustees' Report (con<nued)
Strategic Development
ensure sustainable growth and alignment with its long-term goals. Key achievements during this period include:
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Development of a comprehensive funding strategy.
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Submission of a grant applicaAon to the Sir Halley Stewart Trust .
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Development of the FORGE Connect iniAaAve to strengthen collaboraAon between researchers and families.
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Raising awareness through educaAonal materials and bioPixel prints of the TMEM173 (STING1) gene.
Through these early fundraising and volunteer iniAaAves, FORGE has built a strong foundaAon of goodwill and parAcipaAon. The Trustees recognise and sincerely thank all those who have given their Ame, experAse, and resources to advance the charity’s mission. This collecAve effort has provided both the financial and organisaAonal plaform upon which FORGE will conAnue to grow in the years ahead.
7. Legal Founda)on and Interna)onal Development
FORGE achieved a major milestone in 2023 with its formal registraAon as a Charitable Incorporated OrganisaAon (CIO) with the Charity Commission for England and Wales. This registraAon, completed on 14 December 2023, established the legal framework through which the charity is governed and operates.
Expanding Interna)onal Reach
In recogniAon of the global nature of rare geneAc disease, work is also underway to establish FORGE Australia, which will extend the charity’s impact internaAonally and enhance opportuniAes for collaboraAon. Legal support for this process has been provided pro bono by Baker McKenzie LLP , whose experAse has been invaluable in guiding the development of our internaAonal structure.
As part of this process, FORGE have recruited two future Directors for FORGE Australia:
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Dr Liz Vule)ch , Neuropsychologist and Director of MindLink Psychology
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Sam Stuart , Director and Services Business Lead, Security SoluAons, Mastercard
Their combined experience, both through personal lived experience of rare geneAc disease and professionally across the health and corporate sectors, will be instrumental in shaping the direcAon and governance of the charity’s Australian branch.
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Trustees' Report (con<nued)
internaAonal, and that collaboraAon across borders is essenAal to driving progress. This development will:
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Enable FORGE to engage directly with leading researchers and clinical centres in Australia and the wider Asia–Pacific region.
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Provide a legal and operaAonal foundaAon for cross-border iniAaAves and shared funding opportuniAes.
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growing network of local supporters and potenAal donors.
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networks of experAse and support.
This legal and consAtuAonal development marks a pivotal step in FORGE’s evoluAon from a newly registered UK charity to an emerging internaAonal organisaAon. The Trustees recognise that this foundaAon is essenAal for ensuring effecAve governance, broadening the charity’s reach, and supporAng long-term sustainability as we conAnue to pursue our mission to advance research and support for those affected by rare geneAc disorders.
8. Collabora)on with Pa)ent Advocacy Groups
of everything we do. Meaningful collaboraAon with paAent communiAes is fundamental to achieving our mission of supporAng those affected by rare geneAc condiAons and ensuring that research remains grounded in lived experience.
Building Partnerships with Advocacy Communi)es
During 2024, FORGE was acAve in the SAVI Warriors by the rare autoinflammatory condiAon SAVI. This provided valuable insight into the experiences, challenges, and prioriAes of families living with rare geneAc disease.
Through this plaform, the charity has:
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Conducted surveys and gathered paAent stories for inclusion on the FORGE website.
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Begun building relaAonships that will underpin future collaboraAon and ensure that paAent perspecAves remain central to our advocacy and research prioriAes.
Crea)ve Representa)on and Public Awareness
As part of its commitment to advocacy and public engagement, FORGE submiNed an image to GeneAc Alliance UK for their publicaAon More than You Can Imagine: An Anthology of Rare Experiences. The submission, Atled Inexpressible suffering but inex)nguishable hope , was accompanied by the following reflecAon:
‘The energy and relentlessness of the passage of 'me. The chaos. The beauty. As strategic and technical as the solu'on will be, the journey is s'll very much a raw emo'onal one. FORGE represents the future. Connec'on. Collabora'on. Advocacy.’
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Trustees' Report (con<nued)
the hope that define the rare disease experience.
Working with Melbourne Genomics rare disease (SAVI). This project aims to increase public awareness and understanding, helping to bridge the gap between medical research and real-world impact on families. This was developed to celebrate a 10-year review of genomics in Victoria, Australia.
FORGE ini3ated discussions with the Fresh Heart Project awareness of rare diseases and their impact on families. This exploratory project represents a crea3ve new avenue for advocacy and public engagement.
Communica7ons and Community Building
To strengthen communica3on with supporters, FORGE is developing a Mailchimp newsle>er to share updates, highlight ongoing ini3a3ves, and invite par3cipa3on from families and partners. This plaQorm will con3nue to evolve as the charity’s pa3ent network grows.
Embedding the Pa7ent Voice
These ini3a3ves have strengthened FORGE’s commitment to ensuring that pa3ents and families are not only beneficiaries of research but ac3ve contributors to its direc3on and purpose. The insights gained from these collabora3ons will con3nue to inform the charity’s approach to advocacy, funding priori3es, and communica3on.
By building trusted rela3onships with pa3ent advocacy groups, FORGE has laid the founda3on for a communitycentred model of engagement. These partnerships ensure that the lived experience of those affected by rare gene3c condi3ons remains central to our strategy and will con3nue to shape the charity’s development in the years ahead.
9. Plans for the Future
The focus for the coming period will be on expanding our partnerships, strengthening our research and advocacy networks, and developing the organisa3onal capacity needed to sustain long-term impact.
Strategic Priori7es for 2025
Key areas of focus will include:
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Expanding research collabora7ons: Building on rela3onships established during 2024 with leading researchers and ins3tu3ons to ini3ate joint projects, promote knowledge sharing, and iden3fy new research opportuni3es that align with FORGE’s mission.
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FORGE Connect: This ini3a3ve will build a global network connec3ng pa3ents, families, clinicians, and researchers affected by rare gene3c autoinflammatory disorders, beginning with the SAVI community. Its aim is to iden3fy and reach all individuals and families affected by SAVI worldwide, fostering communica3on, shared experience, and collabora3on between pa3ents and researchers. Through FORGE Connect, the charity will ensure that the pa3ent voice directly informs research priori3es and advocacy.
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Trustees' Report (con<nued)
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research strategy, provide expert oversight, and appraise applica)ons for research grants and collabora)ons, ensuring that all supported work meets the highest standards of scien)fic and ethical integrity.
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Enhancing digital infrastructure: Comple)ng the development of the full FORGE website and expanding the charity’s digital plaIorms to improve accessibility, and enhance engagement with pa)ents, supporters, and collaborators.
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Developing sustainable funding streams: Pursuing grant funding, donor partnerships, and community fundraising ini)a)ves to ensure the long-term financial stability of the charity.
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FORGE Australia registra/on and launch: Finalising the legal establishment of FORGE Australia and commencing its first programme of ac)vi)es in collabora)on with its newly appointed directors and advisors.
The year ahead represents a period of consolida)on and growth for FORGE. With a strong founda)on of partnerships, community support, and strategic direc)on, the charity is well placed to advance its mission, strengthen its global presence, and make a meaningful contribu)on to the rare disease community.
10. Closing Statement
and compassionate force for change. Our growing partnerships, strengthened infrastructure, and deepening community engagement provide a strong plaIorm for advancing research and suppor)ng individuals and families affected by rare gene)c condi)ons as we move beyond 2024.
Equally important has been our developing understanding of the central role of pa)ent advocacy. We remain commiRed to placing the lived experiences of individuals and families at the heart of everything we do. A key focus of our future planning will be to build genuine and sustained engagement between pa)ents and the research ins)tu)ons developing new treatments, ensuring that those most affected help to shape the direc)on of progress.
By giving families a voice and amplifying their stories, FORGE aims to build a more inclusive, informed, and empowered community for those naviga)ng life with rare gene)c disorders. FORGE was founded out of a personal reflec)on on a rare disease diagnosis — how can you live day to day with profound uncertainty and without hope? The answer is that you cannot: you need hope, and hope needs a plan.
and we look forward with op)mism and purpose to what can be achieved in the years ahead.
The annual report was approved by the trustees of the charity on 24 October 2024 and signed on its behalf by:
......................................... Dr Jonathan Hyer Trustee
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FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Statement of Trustees' Responsibilities
The trustees are responsible for preparing the trustees' report and the financial statements in accordance with the United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) and applicable law and regulations.
The law applicable to charities requires the trustees to prepare financial statements for each financial period which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources of the charity for that period. In preparing these financial statements, the trustees are required to:
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select suitable accounting policies and then apply them consistently;
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observe the methods and principles in the Charities SORP;
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make judgements and estimates that are reasonable and prudent;
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state whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements; and
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prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.
The trustees are responsible for keeping proper accounting records that 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 Charities Act 2011, the Charities (Accounts and Reports) Regulations 2008, and the provisions of the constitution. The trustees 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.
The trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company's website. Legislation governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.
Approved by the trustees of the charity on 24 October 2024 and signed on its behalf by:
......................................... Dr Jonathan Hyer Trustee
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FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Independent Examiner's Report to the trustees of FOUNDATION TO OVERCOME RARE GENETIC ERRORS
I report to the trustees on my examination of the accounts of FOUNDATION TO OVERCOME RARE GENETIC ERRORS for the year ended 31 December 2024.
Responsibilities and basis of report
As the charity trustees of FOUNDATION TO OVERCOME RARE GENETIC ERRORS you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (‘the Act’).
I report in respect of my examination of the FOUNDATION TO OVERCOME RARE GENETIC ERRORS's accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
Independent examiner’s statement
I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
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accounting records were not kept in respect of FOUNDATION TO OVERCOME RARE GENETIC ERRORS as required by section 130 of the Act; or
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the accounts do not accord with those records; or
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the accounts do not comply with the accounting requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair view' which is not a matter considered as part of an independent examination.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
...................................... Simon Mannings Chartered Accountant ICAEW
226 Battersea Park Road London SW11 4ND
24 October 2024
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Statement of Financial Activities for the Period from 14 December 2023 to 31 December 2024
| Note Income and Endowments from: Donations and legacies Total income Expenditure on: Raising funds Charitable activities Other expenditure 4 Total expenditure Net expenditure Net movement in funds Reconciliation of funds Total funds carried forward 10 |
Rare Genetic Disease funds £ 9,800 9,800 (1,026) (18,000) (2,700) (21,726) (11,926) (11,926) (11,926) |
Total 2024 £ 9,800 |
|---|---|---|
| 9,800 | ||
| (1,026) (18,000) (2,700) |
||
| (21,726) | ||
| (11,926) | ||
| (11,926) | ||
| (11,926) |
All of the charity's activities derive from continuing operations during the above period.
The notes on pages 17 to 20 form an integral part of these financial statements. Page 14
FOUNDATION TO OVERCOME RARE GENETIC ERRORS
(Registration number: 1206192)
Balance Sheet as at 31 December 2024
| Note Current assets Cash at bank and in hand 8 Creditors: Amounts falling due within one year 9 Net liabilities Funds of the charity: Unrestricted income funds Rare Genetic Disease funds Total funds 10 |
2024 £ 4 (11,930) |
|---|---|
| (11,926) | |
| (11,926) | |
| (11,926) |
The financial statements on pages 14 to 20 were approved by the trustees, and authorised for issue on 24 October 2024 and signed on their behalf by:
......................................... Dr Jonathan Hyer Trustee
The notes on pages 17 to 20 form an integral part of these financial statements. Page 15
FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Cash Flow Statement for the Period from 14 December 2023 to 31 December 2024
| Note Cash flows from operating activities Net cash expenditure Working capital adjustments Increase in creditors 9 Net cash flows from operating activities Net increase in cash and cash equivalents Cash and cash equivalents at 14 December Cash and cash equivalents at 31 December |
2024 £ (11,926) 11,930 |
|---|---|
| 4 | |
| 4 - |
|
| 4 |
All of the cash flows are derived from acquisitions in the current financial period.
The notes on pages 17 to 20 form an integral part of these financial statements. Page 16
FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Notes to the Financial Statements for the Period from 14 December 2023 to 31 December 2024
1 Accounting policies
Statement of compliance
The financial statements have been prepared in accordance with the second edition of the Charities Statement of Recommended Practice issued in October 2019, the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and the Charities Act 2011.
Basis of preparation
FOUNDATION TO OVERCOME RARE GENETIC ERRORS meets the definition of a public benefit entity under FRS 102. The accounts (financial statements) have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise stated in the relevant note(s) to these accounts.
Going concern
The trustees consider that there are no material uncertainties about the charity's ability to continue as a going concern.
Income and endowments
Voluntary income including donations, gifts, legacies and grants that provide core funding or are of a general nature is recognised when the charity has entitlement to the income, it is probable that the income will be received and the amount can be measured with sufficient reliability.
Donations and legacies
Donations and legacies are recognised on a receivable basis when receipt is probable and the amount can be reliably measured.
Expenditure
All expenditure is recognised once there is a legal or constructive obligation to that expenditure, it is probable settlement is required and the amount can be measured reliably. All costs are allocated to the applicable expenditure heading that aggregate similar costs to that category. Where costs cannot be directly attributed to particular headings they have been allocated on a basis consistent with the use of resources, with central staff costs allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset’s use. Other support costs are allocated based on the spread of staff costs.
Raising funds
These are costs incurred in attracting voluntary income, the management of investments and those incurred in trading activities that raise funds.
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Notes to the Financial Statements for the Period from 14 December 2023 to 31 December 2024 (continued)
Charitable activities
Charitable expenditure comprises those costs incurred by the charity 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.
Taxation
The charity is considered to pass the tests set out in Paragraph 1 Schedule 6 of the Finance Act 2010 and therefore it meets the definition of a charitable company for UK corporation tax purposes. Accordingly, the charity is potentially exempt from taxation in respect of income or capital gains received within categories covered by Chapter 3 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.
Cash and cash equivalents
Cash and cash equivalents comprise cash on hand and call deposits, and other short-term highly liquid investments that are readily convertible to a known amount of cash and are subject to an insignificant risk of change in value.
Fund structure
Unrestricted income funds are general funds that are available for use at the trustees discretion in furtherance of the objectives of the charity.
2 Income from donations and legacies
| Donations and legacies; Donations from individuals 3 Expenditure on charitable activities Note Staff costs |
Rare Genetic Disease funds General £ 9,800 9,800 Rare Genetic Disease funds General £ 18,000 |
Total 2024 £ 9,800 |
|---|---|---|
| 9,800 | ||
| Total 2024 £ 18,000 |
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Notes to the Financial Statements for the Period from 14 December 2023 to 31 December 2024 (continued)
4 Other expenditure
| Note Marketing and publicity Total for period ended 31 December 2024 |
Rare Genetic Disease funds General £ 2,700 2,700 |
Total funds £ 2,700 |
|---|---|---|
| 2,700 |
5 Trustees remuneration and expenses
During the period the charity made the following transactions with trustees:
Mr Justin Hyer
Justin Hyer was reimbursed for the cost of fund raising materials.
No trustees, nor any persons connected with them, have received any remuneration from the charity during the year.
No trustees have received any other benefits from the charity during the year.
6 Staff costs
The aggregate payroll costs were as follows:
| 6 Staff costs The aggregate payroll costs were as follows: |
|
|---|---|
| 2024 | |
| £ | |
| Staff costs during the period were: | |
| Other staff costs | 18,000 |
No employee received emoluments of more than £60,000 during the period
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FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Notes to the Financial Statements for the Period from 14 December 2023 to 31 December 2024 (continued)
7 Taxation
The charity is a registered charity and is therefore exempt from taxation.
8 Cash and cash equivalents
| 8 Cash and cash equivalents |
|
|---|---|
| 2024 | |
| £ | |
| Cash at bank | 4 |
9 Creditors: amounts falling due within one year
| 9 Creditors: amounts falling due within one year |
|
|---|---|
| 2024 | |
| £ | |
| Trustees current accounts | 11,930 |
10 Funds
| Rare Genetic Disease funds General |
Incoming resources £ 9,800 |
Resources expended £ (21,726) |
Balance at 31 December 2024 £ (11,926) |
|---|---|---|---|
11 Related party transactions
During the year loans provided to the charity from the trustees were as follows: Justin Hyer £8,010; Steven Hyer £3,932.
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FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Statement of Financial Activities by fund for the Period from 14 December 2023 to 31 December 2024
| Income and Endowments from: Donations and legacies Total income Expenditure on: Raising funds Charitable activities Other expenditure Total expenditure Net expenditure Reconciliation of funds Total funds carried forward |
Total Rare Genetic Disease Funds 2024 £ 9,800 |
|---|---|
| 9,800 | |
| (1,026) (18,000) (2,700) |
|
| (21,726) | |
| (11,926) | |
| (11,926) |
This page does not form part of the statutory financial statements. Page 21
FOUNDATION TO OVERCOME RARE GENETIC ERRORS
Detailed Statement of Financial Activities for the Period from 14 December 2023 to 31 December 2024
| Donations and legacies Appeals and donations Raising funds Fundraising costs Charitable activities Management fees Other expenditure Consultancy fees |
Total 14 December 2023 to 31 December 2024 £ 9,800 |
|---|---|
| 9,800 | |
| (1,026) | |
| (1,026) | |
| (18,000) | |
| (18,000) | |
| (2,700) | |
| (2,700) |
This page does not form part of the statutory financial statements. Page 22