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2025-12-31-accounts

CAMBRIDGE RARE DISEASE NETWORK

Charity Registration number 1166365 FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER

2025Draft as at 28th April 2026

CAMBRIDGE RARE DISEASE NETWORK

CONTENTS FOR THE YEAR ENDED 31 DECEMBER 2025

Page

Reference and Administrative Information 1 Trustees Annual

Report 2 - 9 Independent Examiner's Report 10 Statement of

Financial Activities 11 Balance Sheet 12 Notes to the financial

statements 13 - 18

CAMBRIDGE RARE DISEASE NETWORK

REFERENCE AND ADMINISTRATION INFORMATION FOR THE YEAR ENDED 31 DECEMBER 2025 Draft as at 28th April 2026

1166365

Charity number

Principal Address C/o Windsor House

Station Court Station Road Great Shelford Cambridge CB22 5NE

Trustees Dr G Chandratillake (resigned 11th March 2025) Ms. S L Berry Mrs L Macinnes Mrs S Faircliffe (resigned 23rd February 2025) Mrs E Green Mr J Andrews (resigned 12th May 2025) R Diazaraque (appointed 8th March 2025) Dr C O’Sullivan (appointed 8th March 2025) B Lucas (appointed Treasurer 13th May 2025) W Elridge (appointed 9th December 2025)

Managing Director Mrs J Balfour

Independent Examiner Community360

Winsley's House High Street Colchester Essex, CO1 1UG

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CAMBRIDGE RARE DISEASE NETWORK

TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025 Draft

1. Introduction: A Year of Transition and Strategic Growth

While individual rare diseases are rare, collectively they are common. There are more than 10,000 such conditions, affecting around one in 17 people – an estimated 3.5 million individuals in the UK. For many individuals and their families, the journey to diagnosis, treatment and support remains long and complex. People living with rare conditions often face years of uncertainty, limited information, fragmented care, and social isolation. Even once diagnosed, patients frequently need to repeatedly explain their condition across multiple healthcare settings, while research and treatment development

does not always reflect the priorities of those living with these conditions.

2025 was a year of reflection and celebration for CamRARE, marking our 10th anniversary and highlighting a decade of meaningful progress, impact, and a lasting legacy in supporting people living with rare conditions.

A Year of Transition

2025 was a pivotal year for CamRARE, a bridging year defined by growth, reflection, and preparation for the organisation’s next phase. Throughout the year, the charity continued to deliver impact across its four strategic focus areas: supporting the CamRARE Community, raising awareness and collaboration through events, enabling immersive learning for industry, and promoting patient-led research and involvement.

Alongside this, CamRARE strengthened its internal capacity and governance. In September 2025, Helen Boyd joined as Operations Manager, providing critical operational support and ensuring a structured transfer of institutional knowledge as our founding Managing Director, Jo Balfour, prepares to step down in early 2026.

At the end of the year, following a strategic review of our achievements and future priorities, CamRARE launched its new five-year strategy (2026–2031). The new strategy sets out a vision for a world where everyone affected by a rare condition feels connected, empowered, and supported by driving progress through shared knowledge, inclusive research, and a thriving, resilient community. CamRARE in its mission will make life with a rare condition easier through connection, collaboration, and community. This strategy aims to equip people with rare conditions, and their caregivers, with the tools, resources, and knowledge they need, while building a collaborative, inclusive network that drives shared learning and better care outcomes and ensure that the patient voice is amplified and seamlessly integrated in all rare disease research initiatives.

Delivering Impact Across Strategic Focus Areas

2025 saw notable achievements across all areas of focus:

• Patient-Led Research : Continued global reach of the Rare Patient Passport and growth of the Rare Disease Research Network, demonstrating CamRARE’s commitment to shaping research with patient priorities.

These activities demonstrate CamRARE’s role as a connector, facilitator, and advocate for people affected by rare conditions, ensuring that even during a year of reflection and transition, the charity continued to deliver meaningful outcomes.

CAMBRIDGE RARE DISEASE NETWORK

TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025 Draft

Managing Director Reflection

“It continues to be a privilege to work alongside such a passionate and resilient community. It has been inspiring and has filled me with pride to reflect on 10 years of CamRARE’s work, celebrating our progress and achievements through our families, researchers, and partners. 2025 has been an

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important bridging year - strengthening our foundations, celebrating our legacy, and preparing for the next chapter, where the organisation will continue to grow its impact nationally and globally.”

2. Charity Objectives and Activities

CamRARE exists to improve outcomes for people affected by rare diseases by bringing together patients, families, researchers, clinicians, industry, and policymakers.

Strategic Focus Area 1: CamRARE Community

Objective: Provide a welcoming, supportive environment for children, young people, and families affected by rare conditions, nurturing connection, resilience, and empowerment.

In 2025, CamRARE surpassed its Community growth targets, supporting 54 active families, a 29% increase year-on-year. Guided by insights from our community survey, we evolved our delivery model to focus on a more intentional, high-quality programme, prioritising accessibility and tailored support. This approach strengthened our ability to create inclusive spaces where families can connect, share experiences, and build confidence, delivering more meaningful and impactful engagement.

Activities ranged from sensory arts sessions and outdoor adventures to family picnics, adventure sports and youth group meetups , ensuring that events were adaptable to a wide range of abilities and needs. A particular milestone was achieved by the new 14+ youth group , whose members began organising their own social outings, including bowling and dinner trips - an encouraging sign of the confidence and independence that peer support can help shape.

Recognising the importance of early connection for newly diagnosed families, we also launched preschool soft-play sessions , creating a safe and welcoming space for parents of infants and young children navigating recent diagnoses, including those identified through emerging diagnostic pathways such as whole genome sequencing.

During the year, we strengthened partnerships with several local organisations to expand the support available to families. These included Pinpoint , Cambridgeshire’s SEND charity; Centre 33 , who collaborated with us on a session specifically designed for siblings and young carers; and Caring Together , which supports carers across Cambridgeshire. We also delivered a practical training session with W&P Legal on wills and trust funds for parents of children with disabilities, helping families plan for the future with greater confidence.

To maintain strong connections between events, we continued to improve communication with families through regular Community Newsletters and our bi-annual Celebration-zine , sharing updates, achievements and stories from across the community. Listening to our community remains central to how Unique Feet evolves. As part of our commitment to being community-led, we encouraged families to take part in our annual survey, capturing what matters most to them, how Unique Feet supports them, and shaping our future priorities together. Feedback from our 2025 survey has driven meaningful changes, from improving accessibility and strengthening family engagement, to building connections with organisations to better support mental health and wellbeing. We have also begun exploring new funding approaches to ensure Unique Feet can continue to grow sustainably.

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TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025 Draft

Impact

These activities helped families feel less isolated and more confident navigating life with a rare condition, while creating opportunities for children and young people to build friendships and

independence.

“Joining the CamRARE Community has transformed our lives. My child feels understood, and I now have a network I can rely on for advice and support.”

Focus Area 2: Raising Awareness and Collaboration

Objective: Increase awareness of rare diseases and foster cross-sector collaboration and connect patients, families, researchers, and professionals through educational and networking events.

2025 Highlights:

Throughout 2025, CamRARE continued to bring together patients, families, researchers, clinicians, industry partners and policymakers to strengthen collaboration across the rare disease ecosystem. Our flagship event, RAREsummit, remains a key platform for sharing knowledge, amplifying patient voices and catalysing new partnerships.

RAREsummit: Held on 6 November 2025 at the Wellcome Genome Campus, RAREsummit25 marked the 10th anniversary of CamRARE and brought together 270 delegates , including patients, families, researchers, clinicians, industry leaders, and policymakers. The programme featured 43 speakers, 26 exhibitors and 23 posters , alongside a RAREsummit legacy session highlighting collaborations and partnerships formed through previous summits. Live Rare Disease Research Network (RDRN) research pitches showcased emerging patient-led research ideas, while a dedicated Rare Patient Passport workshop generated new pro bono translation offers and discussions around potential integration with Cambridge University Hospital systems. Beyond the science, sessions on human rights and mental health underscored our commitment to the whole person.

The summit was also a financial success , generating £27,931 profit through sponsorship (£58,000), ticket sales (£12,800) and exhibitor fees (£1,500). During the event, CamRARE also unveiled its new five-year strategy (2026–2031), outlining a renewed focus on community, research and shared purpose across the rare disease ecosystem.

Impact:

RAREsummit continues to play a unique role in connecting the rare disease community and catalysing collaboration across sectors. One attendee described the event as “the best day I have had in terms of progress, learning, networking bar none.” Building on the strong momentum and partnerships generated in 2025, plans are now underway for RAREsummit26 in October 2026 and plans are afoot to once again demonstrate the impact of this event by showcasing impact stories from RAREsummit25.

Strategic Focus Area 3: Immersive Learning for Industry

Objective: Provide opportunities for pharmaceutical, biotechnology and healthcare organisations to learn, network and better understand the patient perspective in rare disease research and innovation.

In 2025, CamRARE continued to strengthen its Companies Forum , creating a trusted space where industry, researchers and patient representatives can engage in open dialogue and learn directly from lived experience. Membership grew by 25% to 15 organisations , with meetings attracting an average of 30 participants , exceeding recruitment targets and generating £23,000 in fee income to support the charity’s work.

CAMBRIDGE RARE DISEASE NETWORK

TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025

Across the year, three high-level forum meetings explored some of the most pressing challenges in

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rare disease research and healthcare.

The April meeting , hosted by Genomics England, focused on the growing role of real-world evidence (RWE) in rare disease research. Representatives from the MHRA and NICE outlined evolving regulatory pathways designed to support highly personalised medicines and improve the use of real-world data in clinical development. Discussions highlighted the importance of early and meaningful Patient and Public Involvement , ensuring research questions and trial endpoints reflect what truly matters to people living with rare conditions.

In July , the forum examined ways to reduce the diagnostic odyssey experienced by many rare disease patients. Sessions explored advances in genomic and multi-omic technologies alongside emerging AI tools capable of analysing electronic health records to identify undiagnosed patients . Discussions also highlighted progress towards the first NICE quality standard for rare diseases , which aims to establish clearer benchmarks for timely referral and care.

The December meeting , hosted by AstraZeneca in Cambridge, explored how patient data and digital technologies can improve research and clinical trials. Speakers examined the potential of wearable devices and new approaches such as AI-driven behavioural analysis (“ethnomics”) to generate more meaningful real-world insights. A key theme emerging from the discussion was that the greatest barrier to progress is often not a lack of data, but its fragmentation across systems and institutions , emphasising the need for stronger cross-sector collaboration.

Impact:

Through the Companies Forum, CamRARE helps ensure that industry partners gain a deeper understanding of the realities of living with rare conditions, encouraging research and innovation that is more patient-centred and better aligned with community needs.

Strategic Focus Area 4: Patient-Led Research and Involvement

Objective: Ensure that people living with rare conditions help shape research priorities, study design and healthcare innovation.

In 2025, CamRARE continued to strengthen its role in supporting patient-led research and knowledge sharing , helping to ensure that the lived experience of rare disease communities informs both research and healthcare practice.

A major focus of this work is the Rare Patient Passport , a tool designed to help individuals communicate vital information about their condition across healthcare settings. During the year, the Passport continued to gain recognition both nationally and internationally, being used by individuals and families in 60 countries and securing partnerships with 65+ patient organisations. Presentations and training sessions were delivered at RAREsummit25, the World Pituitary Organisation Summit in Dublin, the East Genomics Laboratory Hub CPD programme, and the East Genomics Nurses and Midwives in Genetics and Genomics Network, helping to raise awareness of the initiative among clinicians, researchers and patient organisations.

The passport application system via the CamRARE website has been automated in 2025 to improve efficiency and applicant experience. We also partnered with North West London Hospitals NHS Trust and the PatientsKnowBest platform (used by the Trust) to pilot the Rare Patient Passport, making it available on web, mobile, and the NHS App, while signposting patients and families to CamRARE for additional support and resources.

CAMBRIDGE RARE DISEASE NETWORK

TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025

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The Passport’s growing impact was also reflected in academic recognition. Our first peer reviewed research paper describing the project was published in The European Journal of Human Genetics and has been accessed over 4,200 times, while a Rare Patient Passport poster won an award at the British Society of Genomic Medicine Conference. The work also attracted new funding, with CamRARE securing a £20,000 grant from Alexion, AstraZeneca to support development of a digital Rare Patient Passport project in 2026.

Impact:

“ The Passport has transformed how my family navigates healthcare. For the first time, I feel our experience is heard and valued in research.”

Alongside this, CamRARE continued to grow the Rare Disease Research Network (RDRN) , a platform designed to enable people with rare conditions to share research ideas and connect with researchers who can help develop them. Membership grew by 39% to 268 participants, with many connections being made and 10 actionable research ideas submitted through the platform. Several of these patient-driven proposals were showcased at RAREsummit25, helping to demonstrate the value of the platform and encourage collaboration across sectors.

We collaborated with the Patient Led Research Hub and other RDRN partners to develop a landmark academic paper describing the development of the RDRN which was also published in the BMJ Open during the year and has already been downloaded more than 1,300 times , highlighting growing interest in new models of patient-driven research.

Impact

Together, these initiatives are helping to shift the culture of rare disease research toward greater partnership with patients and communities , ensuring that research priorities and healthcare innovations better reflect the realities of living with a rare condition.

“The support I have received through the resources and mentorship offered on the RDRN platform has been invaluable to helping shape and take our research project forward. We now have a clear research question and a research team to help us”.

2025 in Context

2025 was a year of delivery, reflection, and preparation for the future . While guided by our original objectives, we achieved milestones in community growth, industry engagement, patient-led research and strategic planning , culminating in the launch of our new five-year strategy in November 2025. CamRARE is now poised to scale nationally and globally and continue making life with a rare condition easier through connection, collaboration, and community .

Section 3: Financial Review, Governance, and Risk Management

Financial Review

CamRARE maintained a strong financial position in 2025, ending the year with a cash balance of £126,000. While the year reflected a planned operating deficit of approximately £48,000, this was lower than initially forecast, thanks to careful cost management, strong sponsorship and revenue income from RAREsummit25.

The Board reviewed and updated the Reserves Policy, setting a target of £80,000 (approximately six months of operating costs) to ensure stability during the forthcoming leadership transition and to safeguard the delivery of our core mission and activities.

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TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025

Risk Management

Effective risk management continues to be a core part of CamRARE’s operations. Key risks identified in 2025 included operational continuity during the leadership transition, financial sustainability, and safeguarding patient data in an increasingly digital environment. Mitigation strategies included:

corporate sponsorships , project grant funding and community fundraising. New income streams in 2025 have included a small amount of consultancy fees and payment for passport design services. • The charity recognises that competition for grant funding across the voluntary sector is high, and that levels of corporate sponsorship have reduced compared with previous years. The Trustees remain mindful of the need to diversify income streams and to continue developing new models for sustainable growth.

Passport and RDRN platform require long-term sustainable funding models to mitigate these risks. Through these measures, the Board and executive team are confident that CamRARE is well positioned to continue delivering its vision and mission with resilience and accountability.

Governance

2025 was a pivotal year for organisational governance. The Board focused on succession planning in anticipation of the Managing Director’s planned departure in early 2026. An open recruitment process is planned, strengthening the pipeline for future leadership and a structured handover period and plan for the incoming CEO scheduled for early 2026. The primary risk identified was founding leader dependency; this was mitigated by the full-time Operations Manager role and a refreshed Trustee board with specialised skills in finance, commercial operations and industry.

To support a robust operational infrastructure, CamRARE successfully migrated financial systems to QuickBooks, providing greater transparency and streamlining reporting. We also undertook a comprehensive review of all charity policies to ensure alignment with best practice and regulatory requirements.

Governing Document

CamRARE is a Charitable Incorporated Organisation operating under the Foundation model, in which its only voting members are charity trustees. The transfer to CIO status was made on 22 September 2022 and the charity works to the governing document.

Trustee Induction and Training

Newly appointed trustees with little prior knowledge of the role are invited to attend Trustee Responsibilities training. All Trustees have reference to a CamRARE Trustees Handbook and a full set of charity policies for onboarding and induction.

Organisation

The Board of Trustees has no maximum number of members, and currently, the seven members administer the charity. The Board meets six times a year. Long standing Trustee and previous Chair, Dr Gemma Chandratillake stepped down from her role in 2025 but continues to be an ambassador for CamRARE in her role in Genomics Education. Sarah Faircliffe and Joseph Andrews, Treasurer, also resigned from their posts in 2025. In line with our succession planning, we welcomed new Trustees to the Board in 2025 ensuring skills gaps were closed. Dr Ruth Diazaraque, Dr Catherine O’Sullivan and Bill Elridge joined as Trustees and Billy Lucas as Treasurer. We thank all of these trustees for their valuable service to the charity and the community it serves.

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CAMBRIDGE RARE DISEASE NETWORK

TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025 Draft

Responsibilities of the Trustees

The Trustees are responsible for preparing the Trustees’ Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). They must not approve these financial statements unless they are satisfied that they provide a true and fair view of the state of affairs of the charitable company for that period, specifically regarding its incoming resources and their application.

Pay Policy and Staff

The charity’s policy is that Trustees give their time voluntarily and receive no financial benefit from the organisation. No Trustees claimed expenses from the charity during the last financial year.

During 2025, CamRARE employed five members of staff. Jo Balfour continues in her full-time role as Managing Director. Lindsey Brown continues part-time as Events and Projects Officer and Vaila Morrison as part-time Communications and Design Officer Celia Enderle stepped down as Community Engagement Officer in September 2025 to begin a new teaching career. Both Vaila and Celia are members of our Unique Feet community and bring valuable lived and professional experience to their roles.

Pay is reviewed annually and benchmarked against salaries for comparable charity roles outside London, with consideration given to the charity’s financial position and budget forecasts. All other services are paid at agreed contracted rates and patient and public contributors to funded projects remunerated at NIHR advised rates.

In preparing these financial statements, the Trustees are required to:

The Trustees are responsible for keeping adequate accounting records sufficient to show and explain the charitable company’s transactions and disclose with reasonable accuracy at any time the financial position of the charitable company. Trustees are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps to prevent and detect fraud and other irregularities.

Emma Green

This report is approved by the Trustees and signed on their behalf by:.........................................

23 Jun 26

Chair and trustee Date

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CAMBRIDGE RARE DISEASE NETWORK

TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2025

Organisation Details

Registered Office: c/o Windsor House, Station Court, Station Road, Great Shelford, CB22 5NE

Registered Charity number – 1166365 - Registered on 5 April 2016 Transferred to Charitable Incorporated Organisation on 28 September 2022

Trustees Current

Susan Berry (appointed 29/07/2019) Emma Green (appointed 03/10/2022 - appointed Chair 23/01/2024) Loretta MacInnes (appointed 03/10/2022) Ruth Diazaraque (appointed 08/03/2025) Dr Catherine O’Sullivan (appointed 08/03/2025) Billy Lucas (appointed Treasurer 13/05/2025) William Elridge (appointed 09/12/2025)

Resigned 2025

Dr Gemma Chandratillake (appointed 15/05/2017 – resigned 11/03/2025) Sarah Faircliffe (appointed 03/10/2022- resigned 23/02/2025))

Joseph Andrews (appointed 27/04/2024 – resigned 12/05/2025)

Management and Operations

Managing Director - Jo Balfour (employed FT) Operations Manager - Helen Boyd (employed Sept 2025) Events and Projects Officer - Lindsey Brown (employed PT) Communications and Design Officer – Vaila Morrison (employed PT Feb 2024) IT consultancy - George Nicolau (contracted) Community Engagement Officer - Celia Enderle (employed PT Feb 2024 – resigned Sept

2025) Rare Patient Passport manuscript support - Costello Medical (pro bono)

Independent Accounts Review - Community360

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CAMBRIDGE RARE DISEASE NETWORK

INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 DECEMBER 2025

I report on the accounts of Cambridge Rare Disease Network for the period ended 31 December 2025 which are set out on pages 11 to 18.

Respective responsibilities of trustees and examiner

The Charity’s Trustees are responsible for the preparation of the accounts. The Charity’s Trustees consider that an audit is not required for this year (under section 144 (2) of the Charities Act 2011 (The Act) but that an independent examination is needed. It is my responsibility to:

Basis of independent examiner’s Statement

My examination was carried out in accordance with the General Directions given by the Charity Commissioners. An examination includes a review of the accounting records kept by the Charity and a comparison of the accounts presented with those records. It also includes considerations of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently I do not express an audit opinion on the view given by the accounts.

Independent examiner’s statement

In the course of my examination, no material matters have come to my attention which gives me cause to believe that in, any material respect:

I 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.

David Courtier FMAAT AATQB for and on behalf of: Community360

Winsley’s House, High Street, Colchester, Essex

Date 25/06/2026 10

CAMBRIDGE RARE DISEASE NETWORK

STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2025

Unrestricted Restricted 2025 2024 funds funds Total Total Notes £ £ £ £

Incoming resources

Incoming resources from generating funds:

Donations and legacies 2 22,667 - 22,667 12,682 Charitable activities 3 100,983 19,131 120,114 169,191

Total incoming resources 123,650 19,131 142,781 181,873 Resources expended Charitable activities 4 157,676 34,909 192,585 231,715 Total charitable expenditure 157,676 34,909 192,585 231,715 Net incoming/(outgoing) resources before transfers (34,026) (15,778) (49,804) (49,841) Previous year adjustment - - - 5,818 Transfers between funds (19,438) 19,438 - - movement in funds Net income/(expenditure) for the year/ Net (53,464) 3,660 (49,804) (44,024)

Fund balances at 1 January 2025 171,352 11,178 182,530 226,554 Fund balances at 31 December 2025 117,888 14,838 132,726 182,530

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BALANCE SHEET AS AT 31 DECEMBER 2025

2025 2024 Notes £ £ £ £

Current assets

Debtors 6 17,990 8,577 Cash at bank and in hand 123,639 178,582 141,628 187,160 Creditors: amounts falling due within one year 7 (8,902) (4,630) Net current assets 132,726 182,530 Total net assets 132,726 182,530

Income funds

Restricted funds 8 14,838 11,178 Unrestricted funds 117,888 171,352

132,726 182,530

2nd June

Approved by the trustees on the …......................... 2026 and signed on their behalf by:

Date Emma Green

23 June 26

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The notes on pages 13-18 form an integral part of these financial statements.

CAMBRIDGE RARE DISEASE NETWORK

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025

1 Accounting Policies

1.1 Basis of accounting

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

Cambridge Rare Disease Network meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy.

There were no significant estimates or judgements made by management in preparing these financial statements.

1.2 Going concern

The trustees have reviewed the financial position of the charity and have a reasonable expectation that the Charity has adequate resources to continue in operation existence for the foreseeable future. Accordingly, the financial statements continue to be prepared on the going concern basis.

1.3 Company status

The Charity is a company limited by guarantee. The members of the Charity are the Trustees named on page 1 and those organisations and individuals who have been invited to become members and where relevant have paid the membership fee. In the event of the Charity being wound up, the liability in respect of the guarantee is limited to £10 per member of the Charity.

1.4 Income

All income is recognised once the Charity has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably.

Income from government and other grants, whether "capital" grants or "revenue" grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received, and the amount can be measured reliably and is not deferred. Income received in advance of a Conference or provision of other specified service, is deferred until the criteria for the income recognition are met.

Donations are recognised when received. Sponsorship income is recognised in relation to the specific events, such as the Internation Summit or RAREfest. Amounts are included as debtors if owing to the charity at the period end or carried forward in creditors if received in advance.

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity; this is normally upon notification of the interest paid or payable by the Bank.

On receipt, donated professional services and facilities are recognised on the basis of the value of the gift to the Charity which is the amount it would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market: a corresponding amount is then recognised in expenditure in the period of receipt.

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NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025

1.5 Fund accounting

General funds are unrestricted funds which are avaliable for use at the discretion of the Trustees in furtherance of the general objectives of the Charity and which have not been designated for other purposes.

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the Charity for particular purposes. The costs of raising and administering such funds are charges against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.

1.6 Expenditure

Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably.

Expenditure on charitable activities is incurred on directly undertaking the activities which further the Charity's objectivies, as well as any associated support costs.

All expenditure is inclusive of irrecoverable VAT.

1.7 Debtors

Trade and other debtors are recognised at the settlement amount after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts.

1.8 Cash at bank and in hand

Cash at bank and in hand includes cash and short-term highly liquid investements with a short maturity of three months or less from the date of acquistion or opening of the deposit or similar account.

1.9 Liabilities and provisions

Liabilities are recognised when there is an obligation at the Balance Sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably.

Liabilities are recognised at the amount that the Charity anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide.

1.10 Financial instruments

The Charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value.

1.11 Cash flow

The financial statements do not include a cash flow statement because the charity, as a small reporting entity, is exempt from the requirement to prepare such a statement under Financial Reporting Standard 1 "Cash flow statements".

1.12 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 compcnat for UK corporation tax purposes. Accordingly, the charity is potentially exempt from taxation in respect of income and 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.

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CAMBRIDGE RARE DISEASE NETWORK

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025

2 Donations and legacies Unrestricted Restricted 2025 2024 Funds Funds Total Total

£ £

3 Charitable activities

Unrestricted Restricted 2025 2024 Funds Funds Total Total

£ £

Delegate Sales 14,754 - 14,754 2,389 Grants - 17,494 17,494 89,486 Sponsorship 84,000 - 84,000 65,861 Other 2,229 1,637 3,866 11,455 100,983 19,131 120,114 169,191 TOTAL 2024 72,305 96,886 169,191

4 Resources expended

Unrestricted Restricted 2025 2024 Funds Funds Total Total

£ £

Staff costs 97,703 21,149 118,852 119,411 Activity costs 147 6,245 6,392 10,718 Accomodation 176 - 176 1,196 Admin & Consultancy 9,420 1,113 10,533 21,557 Advertising & marketing 2,284 2,072 4,356 5,732 Accountancy fees 1,072 - 1,072 1,045 Bank fees 45 - 45 69 DBS Checks - - - 108 General expenses 488 - 488 19,343 Equipment hire 452 - 452 - Event costs 19,974 - 19,974 682 Independent examination - - - 300 Insurance 547 - 547 314 IT software & consumables 97 41 138 1,632 Legal expenses - - - - Postage, freight & courier 177 68 245 1,871 Subscriptions 1,927 234 2,161 913 Travel 2,328 151 2,479 3,314 Venue & catering 20,251 940 21,191 25,089 Website design & admin 590 2,896 3,486 18,421 157,676 34,909 192,585 231,715

TOTAL 2024 134,480 97,235 231,715 15

CAMBRIDGE RARE DISEASE NETWORK

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025

5 Staff costs 2025 2024 Total Total

£ £

Wages and salaries 113,977 115,185 Pension costs 4,875 4,226 118,852 119,411

The average number of persons employed by the Charity during the year was as follows:

2025 2024 No. No. Employees ` 4 4 No employee received remuneration amounting to more than £60,000 in either year. No trustee was paid any remuneration during the periods being reported on. Key management personnel of the charity comprises of the trustees. The trustees have all given their time and expertise without any kind of remuneration or other benefit in kind.

6 Debtors 2025 2024 Total Total £ £ DUE WITHIN ONE YEAR Trade debtors 17,759 4,971 Other debtors - 687 Prepayments and accrued income 230 2,919 17,990 8,577 7 Creditors: amounts falling due within one year 2025 2024 Total Total £ £ Trade creditors 144 1,427 Other creditors 5,458 2,904 Accruals and deferred income 3,300 300 8,902 4,630

16 CAMBRIDGE RARE DISEASE NETWORK

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025

8 Statement of funds

Balance at 1 Balance at 31 January Transfers December 2025 Income Expenditure In/out 2025 £ £ £ £ £

UNRESTRICTED FUNDS

General funds - all funds 171,352 123,650 157,676 (19,438) 117,888

RESTRICTED

True Colours 3,540 - 2,411 - 1,129 Simon Gibson 2,799 - 1,509 - 1,290 Leys - 5,000 - - 5,000 Evelyn Trust - 898 598 - 300 CCF 196 - - 196 D'Oyly Carte 2,865 2,720 - 145 NIHR RDRN - 8,233 27,671 19,438 0 NIHR /Rare Care - 5,000 - - 5,000 Cole Trust 1,000 - - - 1,000 Unique Feet 777 - - - 777 Total restricted funds 11,178 19,131 34,909 19,438 14,838

Total funds 138,506 142,781 192,586 - 132,726

9 Analysis of net assets between funds

Unrestricted Restricted funds funds Total 2025 2025 2025 £ £ £

Fund balances at 31 December 2025 are represented by:

Current assets 126,790 14,838 141,628 Creditors: amounts falling due within one year (5,902) (3,000) (8,902) 120,888 11,838 132,726

Restricted funds represent amounts received for specific projects.

10 Related party transactions

There were no related party transactions in the financial period (2024: £Nil)

17 CAMBRIDGE RARE DISEASE NETWORK

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025

11 Critical accounting estimates and judgements

In the application of the charity's accounting policies, the Trustees are required to make judgements, estimates and assumptions about the carrying amount of assets and liabilities that are not readily apparent from other sources. The estimates and associated assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.

The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised where the revision affects only that period, or in the period of the revision and future periods where the revision affects both current and future periods.

There are no critical accounting estimates or judgements in the financial statements. 18