Company number: 8924646 Charity number: 1157027 (England & Wales) Charity number: SC046712 (Scotland)
THE EHLERS-DANLOS SUPPORT UK
TRUSTEES’ ANNUAL REPORT AND FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025
THE EHLERS-DANLOS SUPPORT UK
CONTENTS
| Pages | |
|---|---|
| Reference and administrative details | 1 |
| Trustees’ annual report | 2-14 |
| Independent examiner’s report | 15 |
| Statement of financial activities | 16 |
| Balance sheet | 17 |
| Notes to the financial statements | 18-22 |
THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
REFERENCE AND ADMINISTRATIVE DETAILS
Trustees Yanina Aubrey-Gimenez Sarita Faulkner Helen Ball Kathryn Caldwell Ellie Cannell Tim de Winter Anne Lavery Laure Nas de Tourris Alison Roux Charlotte Williams Registered Charity numbers 1157027 (England & Wales) SC046712 (Scotland) Company number 8924646 Principal/Registered Office International House 45-55 Commercial Street London E1 6BD
Independent examiner
Jason Foxwell FCCA FCIE 12 Hillbourne Road Poole BH17 7JB
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
TRUSTEES’ ANNUAL REPORT FOR THE YEAR ENDED 31 MARCH 2025
The Trustees (who are also directors for the purposes of the Companies Act 2006) present their annual report together with the financial statements of the charitable company for the year ended 31 March 2025.
The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the charity’s governing document, the Companies Act 2006, the Charities and Trustee Investment (Scotland) Act 2005, the Charities Accounts (Scotland) Regulations 2006 (as amended) and 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).
Objectives and activities
Purpose
The charity’s purpose as set out in its objects is as follows:
The objects are primarily for the relief of persons suffering from Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorders (HSD) through the provision of support, education and practical advice; and to advance medical research into the cause, cure, prevention or relief of the syndrome and that useful results of such research are placed in the public domain.
The trustees have paid due regard to guidance issued by the Charity Commission in deciding what activities the charity should undertake.
Our vision
Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care.
Mission
We are the voice of the EDS and HSD community in the UK.
We bring together people with EDS and HSD in the UK to equitably access diagnosis, treatment and care. We do this through:
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Awareness – We advocate for and empower our community to drive change. We raise their voices, and work with the NHS across the UK in pursuit of services accessible by all.
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Support – We provide a platform to support and connect our community. We deliver information and advice on living with EDS and HSD.
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Knowledge – We build knowledge through information, training and enabling research. We confront misunderstanding and challenge inequality.
Strategic pillars
Based on our theory of change there are three main areas of focus:
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Advocacy and access
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Community and connections
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Information and knowledge.
Underpinning all three pillars to achieve our vision are our fundraising and infrastructure strategies.
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A summary of our activities is provided under each of these headings.
Advocacy and Access
“Knowing that this organisation is here whenever I need them helps me to live a happier, healthier life. They helped me to self-advocate and get diagnosed. I rely on them as my condition changes and progresses, not just for me but for my 16 y/o child who potentially has inherited this (I was only diagnosed at 41).”
We continued to work with policy makers and senior contacts within the NHS to develop new care pathways, raise awareness of the condition with the Department of Work and Pensions and increase knowledge and confidence of medical professionals.
“The service you provide is essential for so many and you do such a great job. I would love to see more information that we can pass on to the professionals we see, that can help them as much as us too. Some professionals recently have wanted to help me but don't know how, or refer me on but then don't get any help from them because they say they can't. It's like going round in circles.”
In Wales we became part of a working group as subject matter experts to co-create a new primary care pathway of care for EDS and HSD. This was as a direct result of the petitions work from the Enough is Enough campaign that started in 2023 where we called for care pathways, NICE guidelines, integrated multidisciplinary teams and training and support for healthcare professionals.
“Thank you for doing what you are doing. You are so essential to people with EDS and HSD in gaining support and advice so that their healthcare practitioners, education providers etc get the information they need to support users of your services and improve their welfare.”
In England we led a debate in Westminster Hall in May which delivered a promise from the Minister for Health and Secondary Care to meet with us to discuss how we can improve the lives of people across the country with EDS. Shortly after making this headway though, the general election was announced and we have had to start again building relationships with new MPs. We also kept a close eye on the new manifesto promises and draft legislation. We actively contributed to the government consultation on the Pathways to Work green paper which included the Personal Independence Payments (PIP) review. And as part of our membership with ARMA (Arthritis and Musculoskeletal Alliance) we also contributed to the consultation on the NHS 10 year plan.
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“The work that you do to educate about EDS and campaign for better NHS care is invaluable. Going forward many of us will be severely impacted financially by changes to benefits - particularly those of us no longer able to work but not eligible for PIP.”
We also worked with NHS East Sussex to create a new pathway for primary care for EDS and HSD based on the work we have been doing in Wales.
“Thank you for all your hard work. It was a lifeline to me finding EDS UK once diagnosed at age 32. As my consultant had no guidance or materials for me.”
In Scotland, we held an exhibition in Holyrood in May and a round table meeting in September. The petition was discussed several times and is still live into 2025-26.
In Northern Ireland, MLA Connie Eagan handed in the EDS UK petition to Stormont in December. Connie promised to follow up with a letter to the Minister for Health requesting a meeting to discuss issues.
We delivered training for Capita who provide assessors for PIP. We discussed EDS and HSD and issues with PIP assessments with their staff in July.
In November we delivered a conference for GPs in London to learn how to diagnose and manage EDS and HSD in primary care. We had over 70 registrations and attendees reported that the session was hugely beneficial.
“Please continue with the GP toolkit to educate them on EDS as they know nothing about it and look at me as if I’m talking nonsense."
We asked those who attended how they would share their knowledge after the event comments included ‘More confident to diagnose and encourage colleagues to think EDS.’ We also asked how their own practice would change and comments included ‘Be more curious, share possible diagnosis with patients. Advocate for patients more.’ And ‘Has given me the confidence to identify and diagnose patients early.’
Dr Emma Reinhold – speaker, medically retired GP, Researcher and Medical Advisory Panel member “It was a privilege to witness a group of clinicians going from curious to confident over the course of an afternoon, thanks to the hard work of an amazing team led by Jill and Susan. It’s also great to see the EDS UK GP Toolkit still delivering value for doctors and patients 6 and a half years on from its launch.”
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Sophie Roberts – Podiatrist and speaker
“A fantastic event simplifying and demystifying the presentation and diagnosis of hEDS/HSD patients for GP’s so they can lead patients on the appropriate treatment pathways to empower them to manage their symptoms and improve quality of life”
In just a year we have made a significant impact by raising the voices of our community to the highest levels of power and decision making. As last year almost all the respondents to our 2025 members’ survey (99%) said that campaigning and lobbying to raise issues with the government and the NHS were important, very important or essential to them.
Community and Connections
We ran support groups to facilitate peer-to-peer support in a safe space. These groups attracted over 3,000 attendances in the year under review. We had over 85 volunteers (90 in 2022-23) either with EDS themselves or caring for someone with EDS. Our volunteers ran over 300 support groups (over 100 in 2022-23), which are often the only occasions for people to learn how to manage their symptoms themselves and share treatment options and ideas about how to live independent and fulfilling lives.
In our annual member survey support from EDS UK had become much more important in the past year, specifically in the devolved nations.
“Unfortunately there is no help or support in my area (Wales) for EDS. I've been told to carry on after my diagnosis with no support. If support was to stop from yourselves I’d have nothing.”
“There are no support services in Scotland except for you!”
“Northern Ireland has no specialist here so the community is all I have for help. I have been on a waiting list to see rheumatology for 5 years and the average wait to be seen is 8 years and rising. So EDS UK is essential for me.”
Many of the feedback questions mentioned concerns around PIP and benefits support.
“The benefits and work help changed my life. Thank you so very much.”
“I have been enabled to effectively fill in DLA forms through the knowledge imparted.”
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We had seven special interest groups: for 18–25-year-olds, teens, parents, elders, LGBTQ+, men, and family and friends. Over 52,000 people (49,000 in 2022-23) engage with each other on the main Facebook page and share suggestions for pain management, discuss symptoms, celebrate fundraising achievements, and support each other. In addition, over 10,000 people (8,000 in 2022-23) connected regularly with each other in 20 closed Facebook groups.
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“I think what is provided nationally and then by regions is beyond amazing. Once I finally got my diagnosis I joined and instantly felt less alone. Being able to ask and answer questions with what others and what I am going through, is incredibly valuable and
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more helpful than I can describe. Thank you for the work that gets put into these, the volunteers are unsung heroes in my opinion.”
We began a new paid webinar series and these have proven to be very successful with excellent feedback from attendees.
“Love the webinars with experts on the topics. I gain a heap of information from these sources and it prevents me from needing to see my GP all the time for things that they may not be able to help me with anyways. Thank you!”
Using funding from Sport England we were able to begin a programme of virtual, online exercise classes which have been adapted for people with hypermobility.
“The monthly Web calls have been absolutely vital for helping manage my conditions and the free exercise classes have got me exercising a little again.”
One of the strongest themes to emerge in the March 2025 survey was the emotional and psychological toll of living with EDS or HSD, particularly when isolated.
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81% said EDS UK helped reduce their feelings of isolation
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75% felt better able to manage their mental health
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84% reported improved understanding of health management
We run a membership scheme for our community to provide safeguarding for our online spaces and support meetings. There is a free membership option to ensure inclusivity and a paid option for people to choose to receive our Fragile Links magazine. We had an average of around 15,000 registered members during the year.
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Information and Knowledge
Our Adviceline
Our UK focused adviceline line delivering targeted information and advice on EDS and HSD remained open two days a week throughout the year. Despite the reduction in opening hours from last year we increased our response to queries by 20%. This is a significant shift in approach and efficiency whilst still delivering excellent support to our community. There are no other UK-specific advice and information hubs on EDS and HSD and so we are proud to provide a unique resource.
“EDS UK is a vital lifeline. I wasn't getting any treatment or support before I discovered this charity and thought I was a malingering hypochondriac with 20 different illnesses. The webinars, support groups and helpline have helped me understand my hEDS, explain it to others and get medical support.”
Our 2025 members’ survey showed just how important our adviceline services continue to be. 84% of members said that the advice and support they received from our adviceline was important, very important, or essential to them. This is an increase of 4% on last year. In the period under review, we handled nearly 4,000 contacts. With top topics including diagnosis, joint pain and diet queries.
“The advice that I have received has literally saved my life during a medical procedure as I was able to advocate for myself and instruct the medical professional of what to do to stop the issue they caused through their lack of knowledge around EDS.”
Our website
We provide a comprehensive website with a wealth of information and knowledge collected on it over many years.
“I have found the EDS UK website a valuable source of information that I have used to pass on information to my GP. The work you all do is brilliant. Thank you.”
“I direct patients to your website at least weekly. I’ve been in healthcare for 3 decades and having your website as a resource is essential to those newly diagnosed. Latest research is also essential for the professionals to make better and more informed decisions with their patients.”
In the 2025 members’ survey 99% of respondents stated that they felt the information about EDS and HSD on the website was important, very important or essential. A further 94% said the recordings and videos by professionals on the website were important, very important or essential.
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“You provide invaluable information! Without the information that you provide here I would have few if any explanations. I am grateful for the information that you provide.”
“Hi, firstly, thank you for existing. This page is a lifeline. The information you provide is invaluable, and so spot on sometimes I could cry as it shows I'm not crazy.”
Our GP and Schools Toolkits
We continued to provide a unique GP toolkit to enable diagnosis and management within primary care. https://gptoolkit.ehlers-danlos.org/ and a unique schools toolkit to support young people in education. https://theschooltoolkit.org/
“Please continue the good work, and raising awareness of hEDS, especially in the medical profession, and schools/universities. My daughter’s teachers did not understand!”
Research
We announced a jointly funded a PhD in Sheffield with Annabelle’s Challenge to research an exercise based intervention programme for people living with vascular EDS. This project will start during the 2025 2026 financial year and run for three years. Starting with a literature review the aim of the study is to produce evidence based exercise guidelines which will make a tremendous impact for this rare type of EDS.
“When you are struggling with chronic pain and mobility issues and being continually rejected for treatment by the NHS, it helps to know someone is on your side. Raising awareness is so important and EDS UK helps us by linking our stories to make our voices heard by those who can change future treatment and research. I now have hope for improved treatment in the future. Alone, I was continually silenced by people who did not understand how much I was suffering. Hope keeps me alive and as active as possible.”
We promote research studies to our members through our e-news and dedicated webpages. We are proud to be able to contribute to the growth of the evidence base for this misunderstood condition through the mobilisation of our members.
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Fundraising and infrastructure
Our income and expenditure position
We ended the year with income of £434,770 and operating costs of £392,489.
Despite the very challenging financial climate for all charities, it has been a positive year of fundraising for The Ehlers-Danlos Support UK. There has been some fabulous (and imaginative!) fundraising; everything from walking the Camino Portugues and a white collar boxing event, to a cabaret evening and swing concert! These are some of the highlights:
Dazzle Walk
Dazzle Walk was back for its fifth year and saw 63 Dazzle Walks taking place, with fundraisers donning their razzliest, dazzliest zebra attire to raise money for EDS UK. Collectively our wonderful team raised an amazing £22,136.
“Attending the first dazzle walk in Northern Ireland was the first time I was able to meet anyone with EDS and this will forever be a very special and memorable moment in my life to which I am very grateful for.”
13 for 13
In October we launched our new community fundraising initiative, 13 for 13, which saw fundraisers getting sponsored to do 13 things for the 13 types of EDS. Highlights included a 13-book reading challenge, 13-hour gaming marathon and playing the handpan for 13 days. Some amazing creative ideas. We’re looking forward to seeing what 13 for 13 2025 will bring!
London Marathon
Our six-person strong 2025 London Marathon team took on this iconic event and raised an incredible £12,653. We’ve got four guaranteed entries in the 2026 event and can’t wait to support Team EDS UK.
“Honestly it was one of the most incredible experiences of my life with the amount of support from start to finish line, the very best of community spirit was on show. The heat was a lot but the pride I felt crossing the finishing line was so worth it.”
“It makes my heart so happy that more awareness and importance is being placed on EDS.”
At The Ehlers-Danlos Support UK, “support” is at the heart of everything we do. And that extends to the incredible individuals who choose to fundraise for us.
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We are proud to offer dedicated, personalised support to each and every fundraiser, helping them every step of the way as they raise vital funds and awareness. Whether they’re running a marathon, organising a cake sale, or taking on another creative challenge, our fundraisers feel part of a bigger team and a wider community. They are valued, motivated, and able to enjoy every moment of their journey with us.
It is our privilege to empower them to give back and to contribute to everything outlined throughout this report. The positive feedback we receive from our fundraisers speaks volumes and is always a joy to hear:
“My sister has EDS and found your organisation to be a really supportive resource, particularly through her pregnancy. I'm delighted I can run for her and EDS UK in the Scottish Half Marathon.”
“I really appreciate everything that you are doing in the fundraising/marketing Team at EDS UK- it makes all the difference and allows us to continue to do what we do as Area Coordinators. Our members really value the support we can provide.”
“I also want to say a heartfelt thank you for the awareness vests you sent – they’ve been brilliant for spreading visibility and starting important conversations. It means a lot to feel supported by the community, and I’m proud to be contributing to such a vital cause.”
“Thank you so much for the lovely and supportive email. I wish I could do more for my friend and her EDS, but it felt good being able raise some awareness and some money for yourselves too.”
These kind words remind us just how important our role is in helping our fundraisers feel connected, confident, and proud of their achievements, while making a real difference to our shared mission.
Legacies
We are grateful to those who choose to leave a gift to The Ehlers-Danlos Support UK in their Will. Gifts given in Wills are incredibly special and help us to confront misunderstanding and challenge inequalities around EDS and HSD.
Trusts, foundations and corporate support
We are delighted to have received support from numerous trusts, foundations and companies this year. Special thanks to Green People and The Sandhu Charitable Foundation for their continued support of our work.
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How we fundraise
We are reliant on voluntary donations to fund our work. We are registered with the Fundraising Regulator and are open about how we raise our funds. We adhere to the Code of Fundraising Practice and are committed to the Fundraising Promise.
This part of our report complies with the good practice recommendations for smaller charities as set out in the Charities Act 2016. We seek to minimise the risk of breaches of fundraising compliance through recruiting experienced fundraising staff and by keeping our knowledge up-to-date through attending relevant webinars, background reading and training. We will proactively engage with the Fundraising Regulator and other bodies as needed to ensure that any concerns raised are addressed as a priority.
We have partnerships with a number of organisations, including some commercial participator agreements. Our fundraising policy and ethical framework covers our approach to working with commercial partners. We are supported in our applications to Trusts and Foundations by carefully selected consultants with whom we have formal agreements. We have safeguards in place with our partners to ensure that we do not compromise our independence in any way. We also ask people to give to us through our regular appeals, giving in memory or by leaving a gift in their Will.
We train and support our staff to identify and protect people in vulnerable circumstances in accordance with our policies on safeguarding and fundraising and ethical framework. All our direct marketing communications contain clear instructions of how a supporter can easily opt out of receiving any further communication should they wish to. Our framework also covers our approach to accepting and refusing donations. Our website outlines our complaints process clearly
Financial review
The Statement of Financial Activities on page 16 shows net increase in funds for the year of £42,281 (2024: decrease of £48,257), which results in an increase in total funds at the balance sheet date to £275,889 (2024: £233,608).
Principal funding sources
EDS UK raises its funds through fundraising activities, grants and donations, members' subscriptions and through the sale of branded goods through its online shop.
Reserves policy
It is the policy of the charity that unrestricted funds not designated for a specific use should be maintained at a level equivalent to a minimum of six months’ operating expenditure. The trustees consider that reserves at this level will ensure that, in the event of a significant drop in funding, they will be able to continue the charity’s current activities while consideration is given to ways in which additional funds may be raised or the operating costs reduced. The trustees have also agreed that the level of reserves may drop below six months’ operating expenditure for a defined length of time. Recourse to this flexibility was made during the year under review but we are pleased to report that by year end coverage had improved to 5 months’ operating expenditure and we expect to be operating at or around our target of six months coverage by March 2026.
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Structure, governance and management
The Ehlers-Danlos Support UK (EDS UK) is a charity and a company limited by guarantee. The governing documents are the company’s memorandum, and articles of association. There are quarterly meetings of the trustees to agree all matters relating to EDS UK, its broad strategy, and areas of activity. These include:
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Annual income and expenditure budgets
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The allocation of its resources
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The employment of professionals and support staff
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Risk management policies and performance.
A Medical Advisory Panel covering the breadth of specialties in contact with EDS provides the trustees with an expert sounding board and ensures that advice and support is in line with current practice. During this year we started a refresh of the panel and reached out to potential new members.
Our trustees
The trustees are able to appoint honorary officers and have done so in respect of a Chair (Charlotte Williams), Deputy Chairs (Laure Nas de Tourris and Tim de Winter), and a Treasurer (Helen Ball). The trustees, who are also the directors for the purpose of company law and who served during the year and to the date of approval of these accounts were:
| Trustee | Date first appointed | Most recent appointment / end of current term |
|---|---|---|
| Yanina Aubrey-Gimenez | Jan 2025 | 2025/2028 |
| Helen Ball | Jan 2025 | 2025/2028 |
| Kathryn Caldwell | Jan 2025 | 2025/2028 |
| Ellie Cannell | February2022 | 2022/2025 |
| Sarita Faulkner | June 2020 | 2022/2025 |
| Jill Harrison | Jan 2025 | 2025/2028 |
| Anne Lavery | February2022 | 2022/2025 |
| Leah Mansfield | June 2014 | Resigned Nov 2024 |
| Laure Nas de Tourris | June 2022 | 2022/2025 |
| Jason Pearce | April 2018 | Resigned Dec 2024 |
| Alison Roux | February2022 | 2022/2025 |
| Stephen Stacey | April 2017 | Resigned Dec 2024 |
| Adrian Steel | Sept 2021 | Resigned Dec 2024 |
| Charlotte Williams | March 2020 | 2023/2026 |
| Tim de Winter | Jan 2025 | 2025/2028 |
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A trustee will serve not more than three years from the date of appointment and be eligible for approval by the AGM of a second consecutive term of three years, on the expiry of which they may be approved by the AGM exceptionally for a final term of three years.
In the year we ran a successful trustee recruitment campaign and were delighted to welcome Yanina AubreyGimenez, Tim de Winter, Helen Ball, Kathryn Caldwell and Jill Harrison to the board. We further strengthened our governance by introducing a new Finance Sub Committee in February.
None of the trustees has any beneficial interest in the company. All of the trustees are members of the company and guarantee to contribute £1 in the event of a winding up.
Chief Executive, Susan Booth leads the work of the senior management team. The team is made up of Nikki Casey (Senior Communities Manager), and Laura Kyriacou (Senior Fundraising Manager).
EDS UK maintains working relationships and memberships with other charities and umbrella organisations that share common purpose with the charity. These collaborations include Annabelle’s Challenge, PoTS UK, EDS Society and HMSA. Memberships include ARMA, AECVO and NCVO. None of these relationships is a related party in terms of the SORP.
The trustees are satisfied that systems are in place to mitigate exposure to the major risks to which the charity could be exposed.
Recruitment, induction, and training of trustees
New trustees are recruited by personal approach or recommendation by a current trustee, response to the advertisements we place, and through the use of recruitment companies specialising in the not-for-profit sector.
Candidate trustees are invited to attend a trustee meeting as an active observer before appointment. New trustees are given copies of the trust deed and a guide to the policies and procedures adopted by the charity. They are invited to participate in an induction process designed by the Chief Executive and encouraged to access the Charity Commission’s online guidance so that they can better understand their role as a trustee, in particular as to the scope of their responsibilities under the Charities Act. Patron and Ambassadors
We are proud to have Ellie Taylor as our Patron and Cherylee Houston and Jacob Chandler as our Ambassadors.
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Trustees’ Responsibility Statement
The Trustees (who are also directors for the purposes of company law) are responsible for preparing the Trustees’ Report and financial statements in accordance with applicable law and UK Accounting Standards.
Company law requires the directors to prepare financial statements for each financial year. Under company law, the directors must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charitable company and of the income and expenditure of the charitable company for that period.
In preparing these financial statements, the Trustees are required to:
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Select suitable accounting policies and then apply them consistently;
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Observe the methods and principles in the Charities SORP;
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Make judgements and accounting estimates that are reasonable and prudent;
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State whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements; and
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Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue to operate.
The trustees are responsible for keeping adequate accounting records that are 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 and enable them to ensure that the financial statement comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
In preparing this report, the Trustees have taken advantage of the small companies exemptions provided by Section 415A of the Companies Act 2006.
This report was approved by the Trustees and signed on their behalf by:
Charlotte Williams Chair of Trustees
Date: 22/11/25
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INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF THE EHLERS-DANLOS SUPPORT UK FOR THE YEAR ENDED 31 MARCH 2025
I report to the charity trustees on my examination of the accounts of the Charitable Company.
Responsibilities and basis of report
As the trustees of the Charity (and also its directors for the purposes of company law) you are responsible for the preparation of the financial statements in accordance with the requirements of the Charities and Trustee Investment (Scotland) Act 2005 (‘the 2005 Act’), the Charities Accounts (Scotland) Regulations 2006 (as amended) and the Companies Act 2006 (‘the 2006 Act’). You are satisfied that the accounts of the Charity are not required by charity or company law to be audited and have chosen instead to have an independent examination.
Having satisfied myself that the accounts of the Charity are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of the Charity’s accounts carried out under section 44(1)(c) of the 2005 Act and section 145 of the Charities Act 2011 (‘the 2011 Act’). In carrying out my examination I have followed the requirements of Regulation 11 of the Charities Accounts (Scotland) Regulations 2006 (as amended) and the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.
Independent examiner’s statement
Since the Charity has gross income exceeding £250,000, is required by company law to prepare its accounts on an accruals basis and is registered as a charity in Scotland your examiner must be a member of a body listed in Regulation 11(2) of the Charities Accounts (Scotland) Regulations 2006 (as amended). I can confirm that I am qualified to undertake the examination because I am a registered member of ACCA and ACIE, both of them listed bodies.
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:
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Accounting records were not kept as required by section 386 of the 2006 Act and Regulation 4 of the 2006 Accounts Regulations; or
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The accounts do not accord with those records with the accounting requirements of Regulation 8 of the Charities Accounts (Scotland) Regulations 2006; or
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The accounts do not comply with the accounting requirements of section 396 of the 2006 Act other than any requirement that the accounts give a ‘true and fair view’ which is not a matter considered as part of an independent examination; or
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The accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities.
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
Jason Foxwell FCCA FCIE
independent-examiner.net, 12 Hillbourne Road, Poole, BH17 7JB
Date: 5 December 2025
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
STATEMENT OF FINANCIAL ACTIVITIES (incorporating an Income and Expenditure Account) FOR THE YEAR ENDED 31 MARCH 2025
| Notes Income from: Donations and legacies 2 Charitable activities 3 Other trading activities Investment income Total income Expenditure on: 4 Cost of raising funds Charitable activities Total expenditure Net income/(expenditure) Transfer of funds Net movement in funds Reconciliation of funds: Total funds brought forward Total funds carried forward |
Unrestricted Funds £ Restricted Funds £ Total Funds 2025 £ Total Funds 2024 £ (restated) 322,374 67,245 389,619 341,002 12,873 - 12,873 10,875 27,756 - 27,756 24,159 4,522 - 4,522 4,265 |
|---|---|
| 367,525 67,245 434,770 380,301 |
|
| 44,015 - 44,015 45,412 264,882 83,592 348,474 383,146 |
|
| 308,897 83,592 392,489 428,558 |
|
| 58,628 (16,347) 42,281 (48,257) - - - - 58,628 (16,347) 42,281 (48,257) 87,755 145,853 233,608 281,865 |
|
| 146,383 129,506 275,889 233,608 |
The Statement of Financial Activities includes all gains and losses recognised in the year.
All of the charity’s activities derive from continuing operations.
The notes on pages 10 to 15 form an integral part of these accounts.
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
BALANCE SHEET AS AT 31 MARCH 2025
| 2025 | 2024 | ||||
|---|---|---|---|---|---|
| Notes | £ | £ | £ | £ | |
| Fixed Assets | |||||
| Tangible assets | 7 | - | 1,275 | ||
| Current Assets | |||||
| Debtors | 8 | 170 | 239 | 239 | |
| Cash at bank and in hand | 287,163 | 244,004 | 004 | ||
| 287,333 | 244,243 | 244,243 | |||
| Creditors: amounts falling due | |||||
| within one year | 9 | (11,444) | (11,910) | ||
| Net current assets | 275,889 | 232,333 | |||
| NET ASSETS | 275,889 | 233,608 | |||
| The funds of the charity: | |||||
| Restricted funds | 10 | 129,506 | 145,853 | ||
| Unrestricted income funds | 146,383 | 87,755 | |||
| 275,889 | 233,608 |
The trustees consider that the charitable company is entitled to exemption from the requirement to have an audit under the provisions of section 477 of the Companies Act 2006 (the Act) and members have not required the company to obtain an audit for the year in accordance with section 476 of the Act.
The trustees acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of financial statements.
These accounts are prepared in accordance with the special provisions of Part 15 of the Companies Act relating to small companies.
The accounts were approved by the trustees, authorised for issue and signed on their behalf by:
Helen Ball
Trustee Date: 22/11/25
The notes on pages 18 to 22 form an integral part of these accounts.
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
NOTES TO THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025
1. ACCOUNTING POLICIES
1.1. Basis of preparation of the accounts
The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) - (Charities SORP (FRS 102)), and the Companies Act 2006.
The Ehlers-Danlos Support UK 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 notes.
The charity has taken advantage of the SORP Bulletin 1 published on 2 February 2016 to not publish a cash flow statement in these accounts.
1.2. Going Concern
The trustees consider that there are no material uncertainties about the charity’s ability to continue as a going concern nor any significant areas of uncertainty that affect the carrying value of assets held by the charity.
1.3. Charitable funds
Unrestricted funds are available for use at the discretion of the trustees in furtherance of the charitable objectives.
Restricted funds are subject to specific conditions by donors or grantors as to how they may be used. The purposes and uses of the restricted funds are set out in the notes to the financial statements.
1.4. Income
All income is recognised once the charity has entitlement to the income, it is probably that the income will be received and the amount of the income receivable can be measured reliably.
Donations and legacies
Donations and legacies are recognised when the charity has been notified in writing of both the amount of settlement date. In the event that a donation/legacy is subject to conditions that require a level of performance by the charity before the charity is entitled to the funds, the income is deferred and not recognised until either those conditions are fully met, or the fulfilment of those conditions is wholly within the control of the charity and it is probable that these conditions will be fulfilled in the reporting period.
Grants receivable
Grants are recognised when the charity has an entitlement to the funds and any conditions linked to the grants have been met. Where performance conditions are attached to the grant and are yet to be met, the income is recognised as a liability and included on the balance sheet as deferred income to be released.
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
NOTES TO THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025 (continued)
1. ACCOUNTING POLICIES (continued)
1.5 Expenditure
All expenditure is recognised once there is a legal or constructive obligation to that expenditure, it is probable settlement is required and the amount can be measured reliably. All costs are allocated to the applicable expenditure heading that aggregate similar costs to that category. Where costs cannot be directly attributed to particular headings they have been allocated on a basis consistent with the use of resources, with central staff costs allocated on the basis of time spent, and depreciation charges allocated on the portion of the asset’s use. Other support costs are allocated based on the spread of staff costs.
1.6 Tangible fixed assets
Tangible fixed assets are initially measured at cost and subsequently measured at cost or valuation, net of depreciation and any impairment losses.
Tangible fixed assets are depreciated over a 3 year period on a straight line basis.
2. DONATIONS AND LEGACIES
| Unrestricted | Restricted | Total | Total | |
|---|---|---|---|---|
| funds | funds | funds | funds | |
| 2025 | 2025 | 2025 | 2024 | |
| £ | £ | £ | £ | |
| (restated) | ||||
| Donations | 220,698 | - | 220,698 | 282,202 |
| Legacies | 20,376 | - | 20,376 | - |
| Grants | 81,300 | 67,245 | 148,545 | 58,800 |
| ───── | ───── | ───── | ───── | |
| £322,374 | £67,245 | £389,619 | £341,002 | |
| ═════ | ═════ | ═════ | ═════ |
3. CHARITABLE ACTIVITIES
| Unrestricted | Restricted | Total | Total | |
|---|---|---|---|---|
| funds | funds | funds | funds | |
| 2025 | 2025 | 2025 | 2024 | |
| £ | £ | £ | £ | |
| Membership subscriptions | 12,873 | - | 12,873 | 10,875 |
| ═════ | ═════ | ═════ | ═════ |
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
NOTES TO THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025 (continued)
4. EXPENDITURE
| 2025 | 2024 | |
|---|---|---|
| £ | £ | |
| (restated) | ||
| Restricted funds – charitable activities | 83,592 | 69,036 |
| Unrestricted funds – charitable activities | 211,721 | 251,034 |
| Unrestricted funds – cost of raising funds | 44,015 | 45,412 |
| ───── | ───── | |
| 339,328 | 365,482 | |
| Share of support costs (see note 5) | 31,088 | 39,253 |
| Share of governance costs (see note 5) | 22,073 | 23,823 |
| ───── | ───── | |
| £392,489 | £428,558 | |
| ═════ | ═════ | |
| Analysis by fund | ||
| Unrestricted funds | 308,897 | 359,521 |
| Restricted funds | 83,592 | 69,037 |
| ───── | ───── | |
| £392,489 | £428,558 | |
| ═════ | ═════ |
5. SUPPORT AND GOVERNANCE COSTS
| Support | Governance | Total | Total | |
|---|---|---|---|---|
| costs | costs | costs | costs | |
| 2025 | 2025 | 2025 | 2024 | |
| £ | £ | £ | £ | |
| Staff costs | 117 | - | 117 | 1,304 |
| Depreciation | 1,275 | - | 1,275 | 2,581 |
| IT costs | 22,456 | - | 22,456 | 9,276 |
| Rent | 3,340 | - | 3,340 | 19,296 |
| Telephone | 2,751 | - | 2,751 | 4,670 |
| Subscriptions | 1,149 | - | 1,149 | 2,126 |
| Bookkeeping and examiner’s fees | - | 21,230 | 21,230 | 22,737 |
| Legal and professional fees | - | 843 | 843 | 1,086 |
| ───── | ───── | ───── | ───── | |
| £31,088 | £22,073 | £53,161 | £63,076 | |
| ═════ | ═════ | ═════ | ═════ |
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
NOTES TO THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025 (continued)
6. TRUSTEES
None of the Trustees (or any persons connected with them) received any remuneration or benefits from the charity during the year.
7. TANGIBLE FIXED ASSETS
| Cost At 1 April 2024 Disposals At 31 March 2025 Depreciation At 1 April 2024 Disposals Depreciation charge for the year At 31 March 2025 Net book value At 31 March 2025 At 31 March 2024 |
Plant and equipment £ Fixtures and fittings £ Computers £ Total £ 3,624 1,988 17,212 22,824 (3,624) (1,988) - (5,612) |
|---|---|
| - - 17,212 17,212 |
|
| 3,624 1,988 15,937 21,549 (3,624) (1,988) - (5,612) - - 1,275 1,275 |
|
| - - 17,212 17,212 |
|
| - - - - |
|
| - - 1,275 1,275 |
8. DEBTORS
| 2025 | 2024 | |
|---|---|---|
| £ | £ | |
| Trade debtors | - | 68 |
| Other debtors | 170 | 171 |
| ───── | ───── | |
| £170 | £239 | |
| ═════ | ═════ |
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THE EHLERS-DANLOS SUPPORT UK YEAR ENDED 31 MARCH 2025
NOTES TO THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025 (continued)
9. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
| 2025 | 2024 | |
|---|---|---|
| £ | £ | |
| Trade creditors | 9,444 | 7,110 |
| Accruals and deferred income | 2,000 | 4,800 |
| ──── | ───── | |
| £11,444 | £11,910 | |
| ════ | ═════ |
10. RESTRICTED FUNDS
| Balance as at | Income | Expenditure | Transfers | Balance as at | |
|---|---|---|---|---|---|
| 1 Apr 2024 | 31 Mar 2025 | ||||
| £ | £ | £ | £ | £ | |
| National Lottery CF – NI | 8,216 | - | (8,216) | - | - |
| Candi | 69,488 | - | (7,460) | - | 62,028 |
| Vascular | 21,043 | - | - | - | 21,043 |
| England | - | 19,985 | (19,985) | - | - |
| GP Conference | - | 30,000 | (30,000) | - | - |
| Scotland | - | 5,000 | (5,000) | - | - |
| Sport England | - | 12,260 | (7,797) | - | 4,463 |
| Other restricted funds | 47,106 | - | (5,134) | 41,972 | |
| ────── | ───── | ───── | ───── | ────── | |
| £145,853 | £67,245 | (£83,592) | - | £129,506 | |
| ══════ | ═════ | ═════ | ═════ | ══════ |
11. RELATED PARTY TRANSACTIONS
There were no related party transactions during the year (2024 – none).
12. RESTATEMENT OF COMPARATIVE FIGURES
Although the total reported figures for 2024 have not changed (there is no change to total income, total expenditure, or the balance sheet), the income and expenditure analysis has been amended to more accurately reflect the correct position. The following changes were made:
Income
The majority of fundraising income has been re-categorised as donations. The income from charitable activities is just the membership subscriptions.
Expenditure
Cost of raising funds has been split out from charitable expenditure.
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