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2024-12-31-accounts

Charity registration number 1183996

MEDICS 4 RARE DISEASES

ANNUAL REPORT AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

MEDICS 4 RARE DISEASES

LEGAL AND ADMINISTRATIVE INFORMATION

Trustees Christopher James France Daniel Conrad Jeffries Emma Macleod (Appointed on 04/02/2025) Sheela Updhyaya (Appointed on 11/02/2025) Professor Russel Hearn (Appointed on 14/02/2025) Harriet Gordon Brown (Appointed on 23/02/2025) Lindsay Jane Birrell (Resigned on 04/12/2025 ) Dr Debra Rachel Fine (Resigned on 08/12/2025 ) Dr Olivia Hannah Grant (Resigned on 05/12/2025 ) Secretary Dr L M R McKay Charity number 1183996 Company number CE029671 11119884 Converted to CIO Principal address Unit 12 Treadaway Technical Centre Treadaway Hill Loudwater High Wycombe HP10 9RS Bookkeeping and payroll Adder Bookkeeping Independent Examiner Caroline Brazier ACA DChA Cansdales Business Advisers Limited Chartered Accountants St Mary’s Court The Broadway Old Amersham Bucks HP70UT

MEDICS 4 RARE DISEASES

CONTENTS

Page
Trustees' Annual report 1 - 11
Independent examiner's report 12
Statement of financial activities 13
Balance sheet 14
Notes to the financial statements 15 - 26

MEDICS 4 RARE DISEASES

TRUSTEES' ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 2024

The Trustees present their annual report and financial statements for the year ended 31 December 2024.

The financial statements have been prepared in accordance with the accounting policies set out in note to the financial statements and comply with the Charity's CIO foundation, the Charities Act 2011, FRS 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland" and the Charities SORP "Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)".

Structure, governance and management

Trustees have been appointed to the M4RD board based on their experience, skills and enthusiasm for the work of M4RD. M4RD relies on the voluntary time that its Trustees generously provide to advance the purposes of the charity. The minimum number of Trustees is three and there is no maximum number. The requirements to be considered for the position of Trustee are outlined in the Charity’s CIO Constitution. Trustee induction is provided by the CEO with input from the Chair of Trustees. This is carried out remotely. The new Trustee is provided with a New Trustee Induction Pack and access to the Charity's documents. M4RD makes use of readily available online training created by other organisations and provides a PDF copy of The Charity Commission's document 'The Essential Trustee'.

The Trustee Board meets quarterly via video conferencing and annually at a face-to-face Strategy Meeting. The CEO, Dr Lucy McKay, is a founding member of the Charity and has been in the role of CEO since September 2018. Lucy is a key opinion leader in the rare disease field having had personal experience of rare disease and training in the NHS as a doctor. She reports to the Trustee Board and is responsible for: implementing the strategy of the charity, as agreed by the Trustees; managing the staff team; oversight of finances and fundraising; and identifying and assessing strategic risks and opportunities.

The current M4RD staff team comprises: Jo McPherson (Partnerships & Community Manager) responsible for daily operations, managing the finances, fundraising and patient advocacy group liaison; Dr Emma Huskinson (Medical Communications Lead) responsible for public relations, liaising with press and writing medical content; Eleanor Churchill (Digital Communications Lead) responsible for the development and delivery of digital projects and digital marketing; and Dr Helen Maginnis (Training Programme Manager) responsible for M4RD’s healthcare professional training projects and activities, delivering the NHS England contract for The Genomics Education Programme and rolling out Rare Disease 101 training for healthcare professionals all over the UK.

Lucy, Jo and Emma work part-time. Both Eleanor and Helen work full-time. The charity has an allocated desk and space for storage at the registered address of the charity. Staff work from home or co-working space. All staff report to the CEO who in turn reports to the Chair. Lucy holds regular 1:1 meetings with the staff team; Jo and Lucy meet weekly with the Chair.

The M4RD Board of Trustees continue to contribute generously to the success of the charity. Following an extraordinary board meeting on 04 December 2024 we welcomed 4 new Trustees, and said goodbye to three Trustees who gave so much in time, thought and support to M4RD:

Dr Debra Fine resigned from the board Dr Olivia Hannah Grant resigned from the board Mrs Lindsay Birrell resigned from the board Mr Chris France was appointed as Chair of the board Prof Russell Hearn appointed as trustee Mrs Sheela Upadhyaya appointed as trustee Mrs Harriet Gordon-Brown appointed as trustee Mrs Emma Macleod appointed as trustee

It was with sadness that the charity said goodbye to Dr Hannah Grant and Dr Debra Fine at the end of the year. Both were founding trustees and part of the original group of medical students from Barts and The London School of Medicine and Dentistry who saw the gap in their training. During their time as Trustees, they qualified as GPs and started families but still managed to dedicate their time and expertise to Medics for Rare Disease. The charity would not have got off the ground or had its successes without them and we will continue to build their legacy.

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

Lindsay Birrell also stepped down at the end of the year. While her time at the charity was shorter, she made a huge impact. In her 18 months tenure as Chair of Trustees she supported the whole team through a strategy review that resulted in a brand change and a clarity of vision, mission and direction. Thank you to Lindsay who will now be able to watch the fruits of her labour unfold while she cheers on Medics 4 Rare Diseases as an integral member of the rare disease community.

Chris France continues as Trustee and has taken the place of interim Chair while the new Trustees settle in. Chris has a background in sales; he founded a successful e-commerce company and continues to work with start-ups. He played a pivotal role in getting M4RD's structure established, mentoring Lucy and steering the charity in the direction of successful strategies.

Dan Jeffries is M4RD's patient representative but has many skills within IT. His day job of creating online interactive educational software means he is able to provide bespoke and greatly discounted services in the creation and development of M4RD's learning management system (M4RD: Learn).

The Board of Trustees and the CEO are responsible for reviewing and updating the Charity's strategic plan. This was most recently carried out at M4RD's Strategy Meeting in July 2023. The priority for 2024 was to have a new brand in terms of look and feel and the tools to clearly communicate the charity’s purpose and activities. Decisionmaking in 2024 was driven by an agreed annual plan.

The CEO uses quarterly Board Meetings to update the Trustees on the progress being made by the charity and to ask questions and receive advice. The CEO is largely responsible for making decisions about activities that achieve the aims and objectives. Large financial decisions (outside of pre-authorised projects) are taken to the board by the CEO to be discussed.

Objectives and activities

Medics 4 Rare Diseases was registered at Companies House as a private company registered by guarantee without share capital (Company Number 11119884) on 20th December 2017. It was registered as a charity in England & Wales (Registered Charity Number 1183996) on 20th June 2019. It became a Charitable Incorporated Organisation (CIO) on 11 July 2022.

Below are the charity’s purposes as set out in the objects contained in the Charity’s CIO Constitution:

The company is established for the objects of the relief of sickness and preservation of health of those suffering from rare diseases, throughout the world, by:

(a) advancing the education of medics, associated professionals and the public in rare diseases, genetic and genomic medicine

(b) promoting research in all areas relating to rare diseases, genetic and genomic medicine and publishing the useful results

(c) promoting improved care and treatment of those suffering from rare diseases.

Aims and public benefit:

The Charity aims to improve the lives of a certain portion of the public: those living with rare diseases and their communities. It does this through raising awareness of the relevance of rare diseases in medical practice. The Charity provides education about rare disease and opportunities to develop a clinician’s understanding of this large population group in the UK in order to better serve it.

Review:

During 2019 the Board of Trustees worked with the Charity Commission to make sure its structure, objects and governing documents were ready for the organisation to be registered as a charity. This required a review of our purposes to make sure they were wholly charitable and benefited the public. In the case of M4RD 'the public' refers to the estimated 3.5 million people in the UK who suffer from a rare disease - and their communities.

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

Following guidance from the Charity Commission the Board of Trustees adapted the company's original Memorandum & Articles to make sure the wording was suitable for the charity. Subsequently the Charity’s CIO Constitution was written to reflect the recommendations from the Charity Commission. The organisation's objects are wholly charitable. Any personal benefit arising is legitimately incidental.

The Board of Trustees review M4RD's objectives, goals and strategies on an annual basis at the Strategy Meeting. This is done with reference to guidance contained in the Charity Commission's general guidance on public benefit

Activities:

A rare disease is defined in the UK as a condition that affects fewer than 1 in 2,000 people. Almost 7,000 rare diseases have been identified, which means that understanding and teaching about rare diseases in medical education is extremely challenging. However this is a challenge that we cannot afford to avoid because approximately 3.5 million people in the UK have a rare disease. So while each disease is individually rare, they are collectively common.

Of these diseases, 80% are known to be genetic in origin and 70% present exclusively in childhood. However, despite this large prevalence (equivalent to all adults in the UK who suffer with asthma), each individual condition affects so few people that they tend to be overlooked and misunderstood by health professionals, researchers, education and social care providers and the general public. This lack of awareness amongst medical professionals is particularly devastating and can lead to extreme diagnostic delay. A person with a rare disease will wait on average 4-6 years for an accurate diagnosis. They will see numerous doctors, receive misdiagnoses and potentially even inappropriate treatment.This long and arduous journey to a diagnosis has been named "the Diagnostic Odyssey".

The challenges of having a rare disease do not stop after getting a diagnosis. People living with completely different diseases often report the same difficulties in terms of healthcare, social care, family life, education, work and mental health. There are many wonderful charities in the UK that support rare disease patients depending on their disease or specific need. Umbrella charities run successful public awareness campaigns. However M4RD specifically targets an audience that nobody else has been specifically concentrating on but could make the greatest impact on the diagnostic odyssey and the challenges that follow: medical students and doctors.

In 2024 Medics 4 Rare Diseases decided to become known as Medics for Rare Disease - a small but important change that aligns with our own training. The charity advocates for a Rare Aware approach to medical training and practice. Doctors do not need to name or know about 1000s of rare diseases however they do need to understand the prevalence of rare disease (6%), when to suspect a patient may have an undiagnosed rare disease and know how to effectively care for their rare disease patients. After 18 months of reflection and discussion the Trustees and Staff decided that…

Our vision is equitable healthcare for everybody.

Our mission is to shape a medical profession that can provide a timely diagnosis and excellent care for people living with rare disease.

All of our activities fall under three strategic pillars:

Our main target audience is medical students, doctors and those that govern or train these two groups. However we also work with other healthcare professionals and can’t do any of our work without the generous collaboration of Patient Advocacy Groups and individuals within the rare community. Please refer to the section on 2024 activities for more details.

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

Wider network:

M4RD collaborates with many umbrella and disease-specific rare disease advocacy groups in order to achieve its objectives. To name a few: CamRare, Genetic Alliance UK, Rare Revolution Magazine, Breaking Down Barriers, Rare Community Network, Rareminds, Metabolic Support UK and EDIRA.

M4RD also partners with Beacon to run the annual ‘Student Voice Prize’ essay competition and with The Royal Society of Medicine to host its annual symposium ‘The Unusual Suspects’. Both are UK registered charities.

M4RD works with the UK Government’s Department of Health and Social Care in relation to The UK Rare Diseases Framework.

M4RD has a global reach, working with Medscape and The Global Nursing Network and is a Commissioner for The Lancet’s Global Commission on Rare Disease.

M4RD receives pro bono support from the health communications agency, Emotive.The charity also depends on volunteers to contribute to projects and speak at events.

Achievements and performance

Chair comments

2024 marked a pivotal year for Medics 4 Rare Diseases, defined by the fresh energy of an increased number of staff and work towards a bold new identity. The work on our rebrand has not only modernised our look but also given us an opportunity to reaffirm our commitment to patient-centered medical education about rare disease. This year saw us deliver training to hundreds of medical students, doctors and other healthcare professionals, and continue providing our flagship Rare Disease 101 online learning, which is now reaching wider and more diverse audiences than ever before.

We were proud to contribute to the four nations’ Rare Disease Action Plans, take part in Rare Disease Day Celebration at the Houses of Parliament, and strengthen our voice through collaborative work with NHS England and patient organisations. These efforts, combined with the dedication of our staff, trustees, and supporters, have helped move the needle so that rare is no longer synonymous with overlooked. As we look to the future, we remain focused on driving systemic change so that every medic is equipped to serve patients with rare conditions— confidently, compassionately, and competently.

Mr Chris France Trustee and Chair

CEO comments

The end of 2024 saw the end of an 18 month chapter in the life of the charity and the start of the next phase. In 2011 we started as Barts and London Rare Disease Society, by 2014 we had become Students 4 Rare Diseases. We graduated to Medics 4 Rare Diseases in 2018 and we end 2024 as Medics for Rare Disease. Each name change signifies an adaptation to the changing landscape of rare disease in the consciousness of medical professionals. Our new name better suits our ethos and our tag line of ‘excellence in rare disease training’ reflects that rare disease medical training is a necessity not a nicety. And any rare disease training needs to be of top quality standard in order to meet the needs of this large and marginalised patient population.

I am so grateful to the Trustee and Staff team for their perseverance during this time of re-evaluation and I look forward to seeing how the public respond to the charity’s new look and direction when it’s launched in 2025.

Dr Lucy McKay CEO

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

ADVOCACY Achievements

Rare Disease Day

Building on the success of last year’s Error in formula ->#ShowYourStripes<- campaign, we targeted whole teams of HCPs, alongside key individual contacts. We increased our audience, reaching new teams and groups of HCPs, whilst also contacting those HCPs who took part last year and asking them to help spread the word by sharing the message with a colleague or ‘Rare Ally’.

Dozens of branded, shiny red envelopes containing stripey socks, posters and personalised letters were posted. Letters and key messages were tailored to the different audiences. We strengthened our relationships with those who took part last year by sending them fun new, colourful stripey socks for themselves plus a black and white pair to give to a colleague and spread the message by word-of-mouth.

Buy-in was overwhelming, with involvement from healthcare professionals and advocates across the globe. We received over 200 photos, many of which were group shots! Medics of all sorts took part, from GPs, acute and general physicians and surgeons through to paediatricians, neurologists, obstetricians! There was also an incredible effort from nurses, geneticists, medical students and teams of loyal advocates. Furthermore, a whole school got involved and we managed to get some lovely local media coverage of the story!

Policy

M4RD has been granted permission by The Department of Health and Social Care to create an Independent Advisory Group for The UK Rare Diseases Framework Forum. The purpose of this group is to bring expertise from across the four Nations together to combine efforts for addressing Priority 2, ‘Healthcare Professional Awareness’. The group is in its early stages and we will keep you updated on progress made in the next update.

Defining clinical excellence

M4RD is now a Registered Stakeholder with NICE, contributing to consultations. In 2024 M4RD gave guidance as part of the consultation on ‘NICE integrated topic prioritisation and strategic principles’ which we saw as a chance to ensure Rare Disease is integrated into all decision making and decision making takes into account the unique challenges in RD.

M4RD’s Ambassadors contributed valuable clinical and lived experience insight for the consultation on NICE Clinical Guidelines for Adrenal Insufficiency in July 2024. Adrenal insufficiency is the core issue in Addison’s Disease, and is also a component of many other rare conditions. This condition starts in early life and can be fatal if not diagnosed and treated competently - both diagnosis and treatment are well known and understood however the condition remains poorly managed due to a lack of HCP awareness. This leaves individuals and families at risk and anxious, having to always advocate despite the condition being well understood.

We also consulted with other advocacy groups with an interest in the timely diagnosis and management of adrenal insufficiency to ensure we reinforced their input as well. You can listen to an episode with Dr Grace Knight whose brother has Addison’s Disease here to find out more about this process and what it means to families.

The Lancet’s Global Commission on Rare Diseases

The Lancet’s Global Commission on Rare Diseases is a new global initiative dedicated to generating evidence and equity-informed recommendations that are implementable and impactful across the world to dramatically improve the lives of People Living with a Rare Disease (PLWRD). The initiative brings together 27 commissioners representing countries around the world to make recommendations on implementing global recognition and action. Split between 5 working groups each focussed on a different challenge faced by PLWRD.

Lucy McKay is a Commissioner and Co-Chair of Working Group 2, researching the visibility of PLWRD in society and achievement of social justice. We will be working alongside collaborators to generate evidence based recommendations and actions towards societal justice for PLWRD. To ensure that all people living with a rare condition are supported by society and services to live well and that their voices are heard globally.

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

The Rare Disease Podcast 4 Medics

We published 26 new episodes of The Rare Disease Podcast 4 Medics in 2024. By the end of 2024 7 Seasons of the podcast had been completed encompassing 74 episodes and reaching 14,000 downloads. The podcast’s title was changed to The Rare Disease Podcast in order to broaden its appeal and guests include advocates, clinicians, authors, researchers.

The Rare Disease Podcast for Medics is available on Apple Podcasts and Spotify, as well as other major podcast providers. It is rated five stars and is often the way that people first hear about the charity.

The best performing episode of Season 6 was an interview with Bonnie Jackson who is the mum of a young girl living with a rare connective tissue disorder. Vascular EDS can seem invisible however it can be fatal if not managed appropriately. Bonnie discussed the importance of timely diagnosis and HCPs knowing where to go for help diagnosing suspected undiagnosed genetic conditions. The episode is called ‘Think Rare Think Genetics’.

The episode podcast discussing “‘Two for Joy - the uplifting true story of one courageous family’s life of happiness with severely disabled twins ’” by James Melville-Ross was the best performing episode of Season 7, with 136 downloads so far and proves book reviews are popular with our audience.

TRAINING Achievements

NHS England: Genomics Education Programme

So much has been achieved from the collaboration between NHS England’s Genomics Education Programme and M4RD. M4RD co-hosted an online webinar in January ‘Building NHS healthcare professional awareness resources’ to hear from the rare disease community, and over 30 people attended, which enabled a fantastic conversation about mental health and transition of care in rare disease. Four knowledge summaries were published to GeNotes on RDD.

M4RD hosted an in-person workshop in Birmingham with the GEP team to explore and advise on GEP’s strategic priorities and to determine how we could continue to support the development of this trusted resource for healthcare professionals.

Red Flags of Rare Disease Survey results published in OJRD

M4RD is proud to announce our most recent study, published in the Orphanet Journal of Rare Diseases. The study has identified seven key clinical clues, or ‘red flags’, that point to a possible underlying rare condition. The findings will aid the development of clinical decision-making tools for healthcare professionals, such as general practitioners. The aim of such tools will be to help the user detect when a patient may have an underlying undiagnosed rare condition, thereby shortening the diagnostic odyssey. The study was authored by Dr Lucy McKay, alongside Dr Mariam Al-Attar (M4RD Ambassador) and Dr Sondra Butterworth (RareQOL/EDIRA). With thanks to Costello Medical’s pro bono support to get the final manuscript completed and published. You can read the full report here.

We are so proud of this study, which really launched M4RD into the rare advocacy world in 2018 and now is finally part of medical literature. We know - from our network of patients, families and advocates - that clinical recognition of ‘rare disease’ can greatly improve patient outcomes. Whilst ‘rare disease’ isn’t a final diagnosis, it is often the turning point in clinical management that directs patients towards the investigation, care and support they need.

Since its publication the results of this research have already been used for training healthcare professionals. The example above demonstrates the difference between expert opinions from clinicians vs PAGs. The message is that HCPs must use a mix of expert resources in order to develop a gut feeling for when someone may have an undiagnosed rare condition.

The Unusual Suspects: Rare disease in everyday medicine 2024

2024 marked 10 years since the event was first hosted at the RSM and M4RD’s Annual Meeting has become a key date for everyone’s diaries where healthcare professionals, students, educators, patients and carers gather to raise awareness and emphasise the importance of a holistic approach to rare disease, providing tips to improve the diagnostic journey and management.

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

The in-person tickets for the 21st February at the Royal Society of Medicine were SOLD OUT and over 200 participants registered for the online streaming/watch on demand option. This year, the focus of the event was on communication with those impacted by rare disease. Focusing on how communication can be a doctor's greatest tool or greatest weapon, speakers provided training on how to provide psychologically informed care.

A full report from the event available here.

“I found the event to be really helpful and eye-opening. As a medical student we are taught to identify high yield topics and ignore the rare/less important ones. We are trained to give care to the wide public, and not trained to cater to specific needs of people with serious diseases. Attending this webinar changed my point of view, and showed me how I can implement small changes and improve care for all patients.”

Many thanks to the RSM Medical Genetics Section for supporting us with our event and allowing us to use their prestigious platform.

First Do No Harm: Expert reflections on a rare bone condition

In February M4RD organised an event at the Royal College of Surgeons of England in association with FOP Friends and the Hunterian Museum. This event for HCPs highlighted the challenges faced by rare disease patients through the rare bone condition Fibrodysplasia Ossificans Progressiva (FOP). The variety of speakers took us on a journey of understanding the history of FOP and the realities of living with the condition. After the talks, delegates visited the skeleton of Mr Jeffs, a gentleman who lived with FOP in the 18th Century. The Hunterian Museum is keen to continue working with M4RD to use their collection for greater understanding about rare conditions.

“The speakers were exceptional. Their honesty of the people with rare diseases was disarming and very moving. Hearing their stories will stay with me forever and positively influence my interactions with patients in the future.”

Postgraduate Rare Disease 101 Training

M4RD was delighted to work with Sheffield Teaching Hospitals NHS Foundation Trust to deliver mandatory Rare Disease 101 training to Foundation Year 1 doctors for a second year. 80 doctors joined us over two dates in September and October for the first of three sessions exploring the impact of rare conditions on impacted people. 93% of attendees who returned feedback rated the training session as either good or very good.

GP VTS Training

Upon graduation, all UK doctors complete the two-year Foundation Programme, after which time many doctors choose to enter further formal training. General Practice Specialty Training (GPST) accommodates the largest number of doctors taking this route, with 3935 available ST1 training places in England in 2023.

Whilst it would be unrealistic for GPs to be experts in thousands of rare conditions, it is crucial that they appreciate when a person could be presenting with symptoms attributable to a rare condition and where to access further diagnostic support. As the “gatekeepers” of NHS healthcare, they must also be able to effectively coordinate the complex care of those impacted by rare conditions.

In November, M4RD delivered updated training to sixty three GP trainees. Following training, attendees felt more confident in their understanding of the common challenges faced by those impacted by rare conditions and had an improved understanding of resources that could assist them in supporting these patients. The percentage of GP trainees who felt that learning about rare conditions was either important or very important in relation to their clinical practice increased from 59% to 96%.

Online Training

'Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course' is being used to inform resources for other healthcare educators. At the end of 2024 M4RD: Learn has 2068 users, across 79 countries. The median length of medical training amongst users was 6.5 years (based on those who provided this info).

The study evaluates Rare Diseases 101, an online training designed and created by M4RD with the assistance - as always - of the rare community. Dr Thomas Dunne and M4RD trustee Dan Jeffries performed the evaluation and authored the study, alongside M4RD’s CEO, Dr Lucy McKay. Read the report here.

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

NETWORK Achievements

M4RD Ambassadors Programme

On the lead up to Rare Disease Day, M4RD’s Ambassadors delivered Rare Disease 101 training sessions in various settings including to: neonatal colleagues at The Royal London Hospital, Respiratory colleagues in Poole, the Paediatrics Department at Colchester Hospital, the University of Manchester Students Union, GP trainee doctors from around Dorset and a group of nurses in Wales during their development day.

We encourage ambassadors to not only engage with each other on our private forums, but have also introduced regular online brews. These sessions have been so popular and have really helped the ambassadors to unite and feel part of a team.

“I genuinely think the ambassador programme is amazing! The addition of the online brews and the end of year inperson meetings have been very positive and it has been amazing to meet so many different people so passionate about rare diseases!”

In July, our second annual 'Ambassador Lunch & Learn' took place in Clerkenwell Green, London, and was attended by ambassadors from all over the UK - many who were meeting each other for the first time! You can read the report here.

“ M4RD has become a sacred space where I am heard, where I am seen, where I am believed. It has allowed me to rebuild trust in medical professionals and to seek to understand why things are the way they are, and what we can do to change them.”

In September, M4RD welcomed its new cohort with an evening induction session attended by 26 new ambassadors and 3 alumni. 35 new ambassadors joined M4RD this year bringing our total of ambassadors ‘on programme’ to 57 PLUS 18 ambassadors who graduated to our alumni!

To accommodate the growing numbers of interested applicants and to maximise benefit to both the charity and those who offer their time to us, successful applicants to M4RD’s ambassador programme will now be eligible for a maximum two-year tenure, after which time they will graduate to Ambassador Alumni. This will ensure that M4RD retains capacity to onboard new ambassadors at the beginning of each academic year, increasing the reach of the programme whilst acknowledging the valued input of our alumni and maintaining the charity’s connection with them. Over the next few months M4RD will consult and consider how to best serve our cohort of Ambassador Alumni to maintain their engagement with the charity.

“When I make my debut onto the wards for the first time as a doctor, I will take forward the lessons that I have learnt from the Lunch and Learn, and from the wonderful people that I have met through M4RD. I know that there are tough and stressful times ahead, but being involved in this group of student, clinical and patient ambassadors will make me a better doctor going forwards, for both people who live with a rare disease and those who don’t.”

The M4RD team would like to thank all the Ambassadors for playing such a pivotal role in enabling M4RD to work with the wider rare disease community and making sure that the patient voice is heard through our work.

The Student Voice Prize 2024

The Student Voice Prize (SVP) is our international essay competition that shines a light on rare conditions amongst budding healthcare professionals and students of the life sciences. Delivered in partnership with Beacon for Rare Diseases thanks to generous sponsorship from Emotive, the 2024 competition saw 123 essays submitted by students from 52 universities across 18 countries - an increase in entries of nearly a quarter from 2023!

What makes the SVP unique is our patient group pairing scheme, offering students the chance to be paired with a rare disease patient or advocate to learn first-hand about their condition and patient experience. This enhances not only their essay submission, but more importantly ensures their future practice will be informed by the lived reality of those impacted by rare conditions.

“ Exploring rare conditions through the lens of the SVP has been a profound journey of discovery, empathy, and a deepened appreciation for the complexities of human health. Each case is a testament to the resilience of individuals facing unique challenges, inspiring me to advocate for greater awareness and understanding in the realm of rare diseases.”

MEDICS 4 RARE DISEASES

TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

Financial Review

Financial Position

The budget for this financial year was decided based on the goals we set out to achieve in 2024 towards the M4RD strategy. We set out to raise £372k in order to fund activities for 2024. In total £274K of funding was secured through sponsorship, donations and contracts.

Total funds carried forward at the end of 2024 is £113,210 The final cash position is £72,327*

*£40,000 kept in a 60 Day Savings Account with CAF Bank

Principal Funding Sources

The principal funding sources for this period were as follows.

Sponsorship by commercial companies via the charity’s Partnership Programme. Partner companies included: Alexion Therapeutics, Alnylam, Amicus Therapeutics, BioCryst, Kyowa Kirin, Novartis, Orchard Therapeutics, PTC Therapeutics, SOBI, Takeda UK, and UCB.

Donations from Takeda UK, Ultragenyx and individuals.

Charitable grants from the Hamamelis Trust and Souter Charitable Trust.

Contracted services by Alexion Pharmaceuticals, Amicus, Costello Medical, LifeArc, Intent Health, Medscape, NHS England, NIHR Rare Care Project, Simbec Orion and The Royal College of General Practitioners.

Pro Bono work was provided by Emotive to the value of £66,000.

Reserves Policy and Review

The Reserves Policy was put in place by The Board of Trustees in 2019. Reserves are to be maintained at a level that ensures that the charity's core activity could continue during a 3 month period of unforeseen financial difficulty during which funding is to be secured. If funding is not secured then this is followed by a 3 month period in which the organisation could be dissolved with all outstanding debt settled.

Financial Risk

The staff team and Trustees can all work from home or remotely in an appropriate location so the charity doesn't own property or have a long term rental contract. M4RD’s biggest financial commitment is staff. The majority of the charity’s work is done 'in house' or provided to M4RD on a pro bono basis therefore external contracts for services are kept to a minimum.

M4RD continues to bank with CAF Bank, which allows a good level of financial oversight by the Treasurer and other Trustees. All the Trustees have access to the online banking system and all payments require two-person authorisation.

The main financial risk, as always, is if funding is not secured. In previous years M4RD has relied predominantly on commercial donations and sponsorship. However, since 2022 the charity has started diversifying funding avenues in order to reduce risk from losing sponsors by identifying grantmakers that M4RD could apply to for charitable funding.

The Trustees also have procedures to alert them early on to a financial short-fall and to act appropriately depending on the situation. This includes a Reserves Policy and close monitoring of actual income vs requested income, and expenditure against the budget set for the year. In 2024, M4RD did not meet its fundraising target however due to its internal policies and procedures the charity was not put at financial risk and was able to meet its key objectives for the year. This demonstrates that these safety nets are helpful for managing risk.

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TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

Plans for future periods

In 2025 Medics 4 Rare Diseases aims to define its next 5 years of strategy. It will need to scale in order to keep up with demand for delivery of Rare Disease 101 and provision of expert advice.

● Our mission is to shape a medical profession that can provide a timely diagnosis and excellent care for people living with rare disease.

We achieve our mission through our three strategic pillars of work and all our activities contribute to the overarching goal under that pillar:

ADVOCACY: Medics for Rare Disease advocates for a Rare Aware approach to education for all medical professionals

TRAINING: Medics for Rare Disease creates and provides Rare Aware medical training

NETWORK: Medics for Rare Disease is building a Rare Aware network of global healthcare professionals and advocates

Our main aims in 2025 will be:

  1. Launch the new branding including a working name change to Medics for Rare Disease

  2. Rare Disease Day 2025 Error in formula ->#ShowYourStripes<- campaign

  3. Launch the new Medics for Rare Disease Website

  4. Providing Rare Disease 101 training to our target audience

  5. Run The Ambassador Programme

  6. Launch Season 8 of The Rare Disease Podcast

  7. Carry out research as a Commissioner of The Lancet’s Global Commission on Rare Diseases

Organisational plans:

The new working name, Medics for Rare Disease, and brand will be publicly launched in January 2025. In early 2025 the new Trustees will settle in and have an induction. Chris France will remain interim Chair until the annual Strategy Meeting. The charity also plans to further diversify its income through applying for more charitable grants.

Future funding:

Medics 4 Rare Diseases' budget for 2025 is £344k, it carries forward £113k from 2024, and will raise the balance of funds through a diversified funding raising strategy that will target established funding sources, newly identified grant gives and exploring philanthropic opportunities.

Events after the end of the reporting period

Particulars of events after the reporting date are detailed in note 20 to the financial statements.

Small company provisions

This report has been prepared in accordance with the provisions applicable to companies entitled to the small companies exemption.

MEDICS 4 RARE DISEASES

TRUSTEES' ANNUAL REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

Statement of Trustees' annual responsibilities

The Trustees are responsible for preparing the Trustees' Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England and Wales requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the Charity and of the incoming resources and application of resources of the Charity for that year.

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

The Trustees are responsible for keeping sufficient 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 Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the Charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The trustees' annual report was approved on .............................. and signed on behalf of the board of trustees by:

Mr Chris France Trustee and Chair

7 September 2025

MEDICS 4 RARE DISEASES

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF MEDICS 4 RARE DISEASES

I report to the Trustees on my examination of the financial statements of Medics 4 Rare Diseases (the Charity) for the year ended 31 December 2024.

Responsibilities and basis of report

As the Trustees of the Charity you are responsible for the preparation of the financial statements in accordance with the requirements of the Charities Act 2011.

I report in respect of my examination of the Charity’s financial statements carried out under section 145 of the Charities Act 2011. In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the Charities Act 2011.

Independent examiner's statement

Your attention is drawn to the fact that the charity has prepared the financial statements in accordance with the relevant version of the Statement of Recommended Practice applicable to charities preparing their financial statements in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) in preference to the Accounting and Reporting by Charities: Statement of Recommended Practice issued on 1 April 2005 which is referred to in the extant regulations but has now been withdrawn. I understand that this has been done in order for the financial statements to provide a true and fair view in accordance with UK Generally Accepted Accounting Practice.

I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

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 financial statements to be reached.

Caroline Brazier ACA DChA Cansdales Business Advisers Limited Chartered Accountants St Mary’s Court The Broadway Old Amersham Bucks HP70UT

Dated: 22 September 2025

MEDICS 4 RARE DISEASES

STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT

FOR THE YEAR ENDED 31 DECEMBER 2024

Unrestricted
Restricted
funds
funds
2024
2024
Notes
£
£
Income from:
Donations and legacies
3
28,173
-
Sponsorships
4
167,000
15,000
Investments
5
1,623
-
Other income
6
76,433
-
Total income
273,229
15,000
Expenditure on:
Charitable activities
7
258,314
9,699
Net income for the year/
Net movement in funds
14,915
5,301
Fund balances at 1 January
2024
76,664
16,330
Fund balances at 31
December 2024
91,579
21,631		 Total Unrestricted
Restricted
funds
funds
2024
2023
2023
£
£
£
28,173
52,962
-
182,000
164,000
15,000
1,623
770
-
76,433
26,905
-
288,229
244,637
15,000
268,013
223,107
5,745
20,216
21,530
9,255
92,994
55,134
7,075
113,210
76,664
16,330		 Total
2023
£
52,962
179,000
770
26,905
259,637
228,852
30,785
62,209
92,994

The statement of financial activities includes all gains and losses recognised in the year.

The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.

The statement of financial activities also complies with the requirements for an income and expenditure account under the Charities Act 2011.

MEDICS 4 RARE DISEASES

BALANCE SHEET

AS AT 31 DECEMBER 2024

Notes
Fixed assets
Intangible assets
14
Tangible assets
15
Current assets
Debtors
16
Cash at bank and in hand
Creditors: amounts falling due within
one year
17
Net current assets
Total assets less current liabilities
Income funds
Restricted funds
20
Unrestricted funds		 2024
£
58,587
72,327
130,914
(22,308)		 £
2,290
2,314
4,604
108,606
113,210
21,631
91,579
113,210		 2023
£
18,925
79,269
98,194
(9,784)		 £
2,290
2,294
4,584
88,410
92,994
16,330
76,664
92,994

The company is entitled to the exemption from the audit requirement contained in section 142(2) of Charities Act 2011, for the year ended 31 December 2024. The accounts have been examined by an independent examiner and their report have been included in these financial statements.

The directors acknowledge their responsibilities for complying with the requirements of the Charities Act 2011 with respect to accounting records and the preparation of financial statements.

The financial statements were approved by the Trustees on 7 September 2025

Mr Chris France Trustee and Chair

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024

1 Accounting policies

Charity information

Medics 4 Rare Diseases is a public benefit entity and a private company limited by guarantee, registered in England and Wales and a registered charity in England and Wales. The address of the registered office is Unit 12 Treadaway Technical Centre, Treadaway Hill, Loudwater, High Wycombe, HP10 9RS.

1.1 Accounting convention

The financial statements have been prepared on the historical cost basis, as modified by the revaluation of certain financial assets and liabilities and investment properties measured at fair value through income or expenditure.

The financial statements are prepared in sterling, which is the functional currency of the entity.

Statement of compliance

These financial statements have been prepared in compliance with FRS 102, 'The Financial Reporting Standard applicable in the UK and the Republic of Ireland', the Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (Charities SORP (FRS 102)) and the Companies Act 2006.

1.2 Going concern

There are no material uncertainties about the charity's ability to continue.

1.3 Charitable funds

Unrestricted funds are available for use at the discretion of the Trustees in furtherance of their charitable objectives.

Designated funds are unrestricted funds earmarked by the trustees for particular future project or commitment.

Restricted funds are subjected to restrictions on their expenditure declared by the donor or through the terms of an appeal, and fall into one of two sub-classes: restricted income funds or endowment funds.

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

1 Accounting policies

(Continued)

1.4 Income

All incoming resources are included in the statement of financial activities when entitlement has passed to the charity; it is probable that the economic benefits associated with the transaction will flow to the charity and the amount can be reliably measured. The following specific policies are applied to particular categories of income:

1.5 Expenditure

Expenditure is recognised on an accruals basis as a liability is incurred. Expenditure includes any VAT which cannot be fully recovered, and is classified under headings of the statement of financial activities to which it relates:

All costs are allocated to expenditure categories reflecting the use of the resource. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs are apportioned between the activities they contribute to on a reasonable, justifiable and consistent basis.

1.6 Intangible fixed assets other than goodwill

Intangible asset acquired on account of registration of trademark & logo is recogonised at cost incurred on filling the patent with the competent authority.

There is no Amortisation charged for intangible acquired on account of registration of trademark & Logo. The carrying value, however will be reviewed at each Balance sheet date. If an entity determines that one of its trademarks is worth less than it was a year ago, the value of the intangible asset must be impaired. When an impairment occurs, the value of the asset must be decreased to its current market value. The difference between the current value of the trademark and its former value must be recorded as a financial loss.

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

1 Accounting policies

(Continued)

1.7 Tangible fixed assets

Tangible assets are initially recorded at cost, and subsequently stated at cost less any accumulated depreciation and impairment losses. Any tangible assets carried at revalued amounts are recorded at the fair value at the date of revaluation less any subsequent accumulated depreciation and subsequent accumulated impairment losses.

An increase in the carrying amount of an asset as a result of a revaluation, is recognised in other recognised gains and losses, unless it reverses a charge for impairment that has previously been recognised as expenditure within the statement of financial activities. A decrease in the carrying amount of an asset as a result of revaluation, is recognised in other recognised gains and losses, except to which it offsets any previous revaluation gain, in which case the loss is shown within other recognised gains and losses on the statement of financial activities.

Depreciation is recognised so as to write off the cost or valuation of assets less their residual values over their useful lives on the following bases:

Computers

25% Reducing Balance method

The gain or loss arising on the disposal of an asset is determined as the difference between the sale proceeds and the carrying value of the asset, and is recognised in the statement of financial activities.

1.8 Impairment of fixed assets

A review for indicators of impairment is carried out at each reporting date, with the recoverable amount being estimated where such indicators exist. Where the carrying value exceeds the recoverable amount, the asset is impaired accordingly. Prior impairments are also reviewed for possible reversal at each reporting date.

For the purposes of impairment testing, when it is not possible to estimate the recoverable amount of an individual asset, an estimate is made of the recoverable amount of the cash-generating unit to which the asset belongs. The cash-generating unit is the smallest identifiable group of assets that includes the asset and generates cash inflows that largely independent of the cash inflows from other assets or groups of assets.

1.9 Cash and cash equivalents

Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in current liabilities.

1.10 Financial instruments

A financial asset or a financial liability is recognised only when the charity becomes a party to the contractual provisions of the instrument.

Basic financial instruments are initially recognised at the amount receivable or payable including any related transaction costs.

Current assets and current liabilities are subsequently measured at the cash or other consideration expected to be paid or received and not discounted.

Debt instruments are subsequently measured at amortised cost.

Where investments in shares are publicly traded or their fair value can otherwise be measured reliably, the investment is subsequently measured at fair value with changes in fair value recognised in income and expenditure. All other such investments are subsequently measured at cost less impairment.

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

1 Accounting policies

(Continued)

Other financial instruments, including derivatives, are initially recognised at fair value, unless payment for an asset is deferred beyond normal business terms or financed at a rate of interest that is not a market rate, in which case the asset is measured at the present value of the future payments discounted at a market rate of interest for a similar debt instrument.

Other financial instruments are subsequently measured at fair value, with any changes recognised in the statement of financial activities, with the exception of hedging instruments in a designated hedging relationship.

Financial assets that are measured at cost or amortised cost are reviewed for objective evidence of impairment at the end of each reporting date. If there is objective evidence of impairment, an impairment loss is recognised under the appropriate heading in the statement of financial activities in which the initial gain was recognised.

For all equity instruments regardless of significance, and other financial assets that are individually significant, these are assessed individually for impairment. Other financial assets are either assessed individually or grouped on the basis of similar credit risk characteristics.

Any reversals of impairment are recognised immediately, to the extent that the reversal does not result in a carrying amount of the financial asset that exceeds

Basic financial assets

Basic financial assets, which include debtors and cash and bank balances, are initially measured at transaction price including transaction costs and are subsequently carried at amortised cost using the effective interest method unless the arrangement constitutes a financing transaction, where the transaction is measured at the present value of the future receipts discounted at a market rate of interest. Financial assets classified as receivable within one year are not amortised.

Basic financial liabilities

Basic financial liabilities, including creditors and bank loans are initially recognised at transaction price unless the arrangement constitutes a financing transaction, where the debt instrument is measured at the present value of the future payments discounted at a market rate of interest. Financial liabilities classified as payable within one year are not amortised.

Debt instruments are subsequently carried at amortised cost, using the effective interest rate method.

Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one year or less. If not, they are presented as non-current liabilities. Trade creditors are recognised initially at transaction price and subsequently measured at amortised cost using the effective interest method.

Derecognition of financial liabilities

Financial liabilities are derecognised when the Charity’s contractual obligations expire or are discharged or cancelled.

1.11 Employee benefits

The cost of any unused holiday entitlement is recognised in the period in which the employee’s services are received.

Termination benefits are recognised immediately as an expense when the Charity is demonstrably committed to terminate the employment of an employee or to provide termination benefits.

1.12 Retirement benefits

Payments to defined contribution retirement benefit schemes are charged as an expense as they fall due.

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

1 Accounting policies

(Continued)

1.13 Fund accounting

Unrestricted funds are available for use at the discretion of the trustees to further any of the charity's purposes.

Designated funds are unrestricted funds earmarked by the trustees for particular future project or commitment.

Restricted funds are subjected to restrictions on their expenditure declared by the donor or through the terms of an appeal, and fall into one of two sub-classes: restricted income funds or endowment funds.

1.14 Defined contribution plans

Contributions to defined contribution plans are recognised as an expense in the period in which the related service is provided. Prepaid contributions are recognised as an asset to the extent that the prepayment will lead to a reduction in future payments or a cash refund.

When contributions are not expected to be settled wholly within 12 months of the end of the reporting date in which the employees render the related service, the liability is measured on a discounted present value basis. The unwinding of the discount is recognised as an expense in the period in which it arises.

1.15 Limited by guarantee

Medics 4 Rare Disease Ltd is a company limited by guarantee and accordingly does not have a share capital.

Every member of the company undertakes to contribute such amount as may be required not exceeding £1 to the assets of the charitable company in the event of its being wound up while he or she is a member, or within one year after he or she ceases to be a member.

2 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.

Critical judgements

The preparation of the financial statements requires management to make judgements, estimates and assumptions that affect the amounts reported. These estimates and judgements are continually reviewed and are based on experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances.

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

3 Donations and legacies

Unrestricted
funds
2024
£
Donations and gifts
22,673
Other
5,500
28,173		 Total Unrestricted
funds
2024
2023
£
£
22,673
46,287
5,500
6,675
28,173
52,962		 Total
2023
£
46,287
6,675
52,962

4 Income from charitable activities

Unrestricted Restricted Total Unrestricted Restricted Total
funds funds funds funds
2024 2024 2024 2023 2023 2023
£ £ £ £ £ £
Sponsorships 167,000 15,000 182,000 164,000 15,000 179,000

5 Investments

**Unrestricted ** Unrestricted
funds funds
2024 2023
£ £
Interest receivable 1,623 770
Other income
Unrestricted Unrestricted
funds funds
2024 2023
£ £
Other income 76,433 26,905

6 Other income

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

7 Charitable activities

Activities
undertaken
directly
Support
costs
2024
2024
£
£
Staff costs
174,347
-
Depreciation
730
-
Rent
4,503
-
Insurance
1,822
-
Telephone
48
-
Computer expenses
7,195
-
Subscriptions
1,407
-
Bank charges
100
-
Administration support
1,583
-
Advertising and marketing
16,408
-
Event costs
18,264
-
Travelling and subsistence
12,355
-
Postage and Print
982
-
Consultancy
21,136
-
Staff welfare and training
1,642
-
Other Cost
12
5,479
262,534
5,479
Analysis by fund
Unrestricted funds
252,835
5,479
Restricted funds
9,699
-		 Total
Activities
undertaken
directly
2024
2023
£
£
174,347
156,077
730
732
4,503
6,590
1,822
438
48
48
7,195
7,615
1,407
159
100
66
1,583
275
16,408
11,879
18,264
8,435
12,355
11,502
982
1,346
21,136
14,783
1,642
1,744
5,491
113
268,013
221,802
258,314
216,057
9,699
5,745		 Support
costs
2023
£
-
-
-
-
-
-
-
-
-
-
-
-
-
-
-
7,050
7,050
7,050
-		 Total
2023
£
156,077
732
6,590
438
48
7,615
159
66
275
11,879
8,435
11,502
1,346
14,783
1,744
7,163
228,852
223,107
5,745

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

8 Support costs

Independent examination
Other assurance services
9
Net movement in funds
Net movement in funds is stated after charging/(crediting)
Depreciation of owned tangible fixed assets		 2024
£
1,386
4,092
5,478
2024
£
730		 2023
£
1,320
5,730
7,050
2023
£
732

10 Trustees

None of the Trustees (or any persons connected with them) received any remuneration or benefits from the Charity during the year. However, the trustees are reimbursed for legitimate costs that the trustees have had to meet personally to carry out their duties.

£Nil (2023: £900) was paid to Mr D Jeffries, one of the trustees, for his professional services in setting up e- learning facilities for the charity.

11 Employees

The average monthly number of employees during the year was:

Charitable activities
Employment costs
Wages and salaries
Social security costs
Other pension costs		 2024
Number
5
2024
£
160,901
10,510
2,936
174,347		 2023
Number
5
2023
£
144,715
8,277
3,085
156,077

Out of the above employment cost, amounting to £Nil (2023:£4,845) forms part of restricted expenditure.

There were no employees whose annual remuneration was more than £60,000.

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

12 Pensions and other post retirement benefits

Defined contribution plans

The amount recognised in income or expenditure as an expense in relation to defined contribution plans was £2,936 (2023: £3,085).

13 Taxation

The charity is exempt from taxation on its activities because all its income is applied for charitable purposes.

14 Intangible fixed assets

14 Intangible fixed assets
Intangibles Assets
£
Cost
At 1 January 2024 and 31 December 2024 2,290
Amortisation charge
At 1 January 2024 and 31 December 2024 -
Carrying amount
At 31 December 2024 2,290
At 31 December 2023 2,290
15 Tangible fixed assets
Computers
£
Cost
At 1 January 2024 4,332
Additions 750
At 31 December 2024 5,082
Depreciation charge
At 1 January 2024 2,038
Depreciation charged in the year 730
At 31 December 2024 2,768
Carrying amount
At 31 December 2024 2,314
At 31 December 2023 2,294

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

16
Debtors
Amounts falling due within one year:
Trade debtors
Prepayments and accrued income
17
Creditors: amounts falling due within one year
Notes
Other taxation and social security
Deferred income
18
Trade creditors
Accruals
18
Deferred income
Other deferred income
Deferred income is included in the financial statements as follows:
Deferred income is included within:
Current liabilities
Movements in the year:
Deferred income at 1 January 2024
Resources deferred in the year
Deferred income at 31 December 2024
19
Retirement benefit schemes
Defined contribution schemes
Charge to profit or loss in respect of defined contribution schemes		 2024
£
25,000
33,587
58,587
2024
£
4,983
15,000
1,934
391
22,308
2024
£
15,000
2024
£
15,000
-
15,000
15,000
2024
£
2,936		 2023
£
13,643
5,282
18,925
2023
£
3,413
-
3,429
2,942
9,784
2023
£
-
2023
£
-
-
-
-
2023
£
3,085

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

19 Retirement benefit schemes

(Continued)

The Charity operates a defined contribution pension scheme for all qualifying employees. The assets of the scheme are held separately from those of the Charity in an independently administered fund.

20 Restricted funds

The restricted funds of the charity comprise the unexpended balances of donations and grants held on trust subject to specific conditions by donors as to how they may be used.

At 1
M4RD Learn
Previous year:
At 1
M4RD Learn		 January
2024
Incoming
resources
Resources
expended
At 31
December
2024
£
£
£
£
16,330
15,000
(9,699)
21,631
January
2023
Incoming
resources
Resources
expended
At 31
December
2023
£
£
£
£
7,075
15,000
(5,745)
16,330

21 Unrestricted funds

The unrestricted funds of the charity comprise the unexpended balances of donations and grants which are not subject to specific conditions by donors and grantors as to how they may be used. These include designated funds which have been set aside out of unrestricted funds by the trustees for specific purposes.

At 1
General funds
Previous year:
At 1
General funds		 January
2024
Incoming
resources
Resources
expended
At 31
December
2024
£
£
£
£
76,664
273,229
(258,314)
91,579
January
2023
Incoming
resources
Resources
expended
At 31
December
2023
£
£
£
£
55,134
244,637
(223,107)
76,664

MEDICS 4 RARE DISEASES

NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024

22
Analysis of net assets between funds
Unrestricted
funds
Restricted
funds
2024
2024
£
£
Fund balances at 31
December 2024 are
represented by:
Intangible fixed assets
2,290
-
Tangible assets
2,314
-
Current assets/(liabilities)
86,975
21,631
91,579
21,631		 Total Unrestricted
funds
Restricted
funds
2024
2023
2023
£
£
£
2,290
2,290
-
2,314
2,294
-
108,606
72,080
16,330
113,210
76,664
16,330		 Total
2023
£
2,290
2,294
88,410
92,994

23 Related party transactions

During the year the Charity entered into the following transactions with related parties:

Consulting fees of £Nil (2023- £600) paid to Dan Jeffries who is trustees of charity.

Reimbursement of expenses amounting to £62 was paid to Dan Jeffries during the year (2023: £Nil). Additionally, travel expenses of £234 were reimbursed to Chris France (2023: £Nil).