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2024-12-31-accounts

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

Page 1

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:

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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:

United Kingdom

Our UK collaboraAons span major centres of excellence in paediatric and immunological research, strengthening our links with naAonal academic and clinical partners:

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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:

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:

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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:

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:

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

Trustees' Report (con<nued)

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:

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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:

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

Trustees' Report (con<nued)

Strategic Development

ensure sustainable growth and alignment with its long-term goals. Key achievements during this period include:

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:

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

Trustees' Report (con<nued)

internaAonal, and that collaboraAon across borders is essenAal to driving progress. This development will:

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:

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.’

Page 9

FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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:

Page 10

FOUNDATION TO OVERCOME RARE GENETIC ERRORS

Trustees' Report (con<nued)

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

Page 11

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:

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

Page 12

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:

  1. accounting records were not kept in respect of FOUNDATION TO OVERCOME RARE GENETIC ERRORS as required by section 130 of the Act; or

  2. the accounts do not accord with those records; or

  3. 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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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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FOUNDATION TO OVERCOME RARE GENETIC ERRORS

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