Charity registration number.. 1181244 bbsuk Bardet-Biedl Syndrome UK Annual Report and Financial Statements for the Year Ended 31 March 2025
Bardet-Biedl Syndrome UK Contents Reference and Adminislralive Details Trustees, Report 2to21 Independent Examinerfs Report 22 Statement of Financial Activities 23 Balan Sheet 24 Notes to the Financial Statements 25to38
Bardet-Biedl Syndrome UK Reference and Administrative Details Trustees.. Emma Hughes, Chair lapFX)inted 9 November 20241 Laura Dowswell, Chair Iresigned 9 November 20241 Chelan Meshram, Vice Chair Dianne Hand, settary Tazeem Abbas, Treasurer Liam Wilkie Rachael Zimbler Dr Shehla Mohammed Gareth Owens Bilaal Ai lappoinled 9 November 20241 Slefan Crocker (resigned 9 November 20241 Charity Registration Number 1181244 Principal Office 43 Ballon Way Hatwich Essex C012 4UP Independent Examiner Westcotts ISWI LLP Chartered Accounlanls & Statutory Auditors 47 Boulport Street Barnstaple Devon EX31 1SQ Bankers Barclays Bank PLC Chelmsford 2 Leicester LE87 2BB Page 1
Bardet-Biedl Syndrome UK Trustees, Report The Trustees present the annual report together with the financial statements of the Charity for the year ended 31 March 2025. Bardet-Bledl Syndrome Bardet-Biedl syndrome is a rare, recessively inherited disorder which affects approximately 1 in 100,000 babies born. Features of the Syndrome include Rod-cone Dystrophy, an eye disorder, characterised by tunnel vision and night blindness, which often leads lo blindness., obesity., renal abnormalities., developmental delay,. speech and language difficulties,. extra fingers andlor toes and learning difficulties. Not all of the features are always present in those diagnosed as having BBS and each one e8n vary in severity and appèarance. The variability in presentation and severity of the Syndrome together with the rarity of the condition (there are approximately 720 diagnosed individuals known to us in the UK) can mean a delayed diagnosis and lack of adequate local health care. Vision. Mission, Values Vision- Our unique experience, knowledge and understanding of Bardel-Biedl syndrome, will ensure that everyone who accesses our ServIS is supported, connected and informed about BBS and empowered lo achieve the best possible outcome. Mission: We are committed lo promoting positive health and wellbeing within the BBS community., lo improving knowledge and understanding amongst those affected, the medical and educational professionals and the wider public,. and lo supporting research and raising awareness of Bardet-Biedl syndrome. Values: / Committed and Passionate rf Inclusive and Cornrnunily Minded O Expeiign¢gd and Understanding O Positive and FOnard Looking Collaborative Structuro. Governance and Managgmgnt Charity Structure Bardet-Biedl Syndrome UK (BBS UK), charity number 1181244 is a Charitable Incorporated Organisalion ICIOI and was registered with the Charity Commission on the 1811212018. BBS UK is the only registered charity supporting people with Bardel-Biedl syndrome, their families, and carers in the UK. The governing document of the Charity is a conslilulion. The CIO formally represents the incorporation of the unincorporated charity, Bardel-Biedl Syndrome UK110273841, formerly known as Laurence-Moon-Bardet-Biedl Society ILMBBSI which was established in 1993. The CIO Is the sucTrssor body lo the original charity which was entered Into the register of mergers on the 2311212020. The Board of Trustees is responsible for the governance of the Charity. The Charity now supports over 720 individuals living with BBS, and their families, carers, and the professionals supporting them across health, education, and social care. Full membership of the Charity is open lo any adult who has Bardet-Biedl syndrome and their family, and any family with one or more affected children, including their grandparents and carers. Page 2
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Governance Trustees are elected during the Annual General Meeting IAGMI of the Charity. Trustees serve three-year terms and a trustee who has served for I0 consecutive terms of three years each may not be re-appointed for a third consecutive temi unless approved by members, bul may be reappointed after an interval of at least three years. The members or the Trustees may al any time decide lo appoint a new trustee in pla of a Iruslee who has retired, been removed, or as an additional trustee. New Iruslees are given an opportunity to observe a board meeting, meet with the Chair of the Board of Trustees and Operations Manager. They are supported with an induction process and are provided with the following.. rf Trustee Infoimalion Booklet O Conslilulion O Strategic Plan O Corè Policios and Piocèdures O Recent minutes of meetings and accounts O Core safeguarding and information security training The Honorary Officers of the Charity hold office for one year bul are eligible for re-election annually. All trustees give their time freely and receive no remuneration or other benefits, however, reasonable incurred expenses are reimbursed 8$ appropriate. The Board seeks lo be representslive of the people with whom the Charity works and individual trustees have sufficient knowledge, both of trusteeship in general and of the Charity's activities, lo enable them lo carry out their role and to represent the Charity. Trustees are expected to undertake training to ensure they remain up to dale with information and procedures. Courses attended have focused on developing governan skills, and include safeguarding, UK GDPR, recruitment and equality, diversity and inclusion training. The Charity Trustees will make available lo each new Iruslee.. a copy of the constitution and any amendments made lo it,. and a copy of the CIO'S lalesl Trustees, Annual Report and Statement of Accounts. NHS Contract Bardet-Biedl Syndrome UK has a contract with NHS England to facilitate the specialist multi-disciplinary clinics, which lake place In Great Ormond Street Hospitsl and St Thomas, Hospital, London and Birmingham Children's Hospital and Queen Elizabeth Hospi181, Birmingham. The requirements of the contract with the National Speeialised Commissioning Team inelude.. To maximise access to NHS provided setvices for patients with Bardet-Biedl Syndrome IBBS}. To provide emotional and practical support and advocacy services for patients affected by BBS and their families. To provide information relating to services provided for patients with BBS, including relevant health promotion and lifestyle infomialion, to maximise the health and life chanS of people living with BBS. To achieve the above, information and support is provided lo the patients and their familieslcarers before, during and after clinics. Accommodation is organised for patients when needed, and assistance is given with travel arrangements. This service provision ensures patients, and their families are well informed about the syndrome and feel well supported lo attend their clinic appointment. BBS UK has a presence al each clinic, offering emotional and practical support lo patients and their families and ensuring they are aware of all relevant benefits and social support services. Post clinic, ongoing support and liaison services are available. Page 3
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Environmental Commitment and Carbon Reduction As a supplier to the NHS, we are committed to supporting the NHS Nel Zero agenda and the UK Government's Procurement Policy Note IPPN 061211. In the next reporting year, we will publish our first Carbon Reduction Plan, establishing a baseline footprint, covering homeworking and essential travel by our remote team. From this we will set a clear trajectory toward Nel Zero by 2045, with interim targets and practical measures already underway, including.. Prioritising public transport for all NHS-IaIed travel Reducing reliance on printing and in-person meetings Promoting energy*fficient homeworking practices We recognise our role in contributing lo a more sustainable health and care system and will continue to review and report on our progress annually. Additional Governance Policies and Procedures BBS UK has the following policies in place.. Activity & Event Organisation Busin8ss Continuity Capability Code of Conduct Complaints Conflict of Interest Dignity at Work Disciplinary Driving Whilst on Business Equal Opportunities Finance Grievance Lone Worker Manag8ment Structur8 Pay Review Research Research Statement and Phamia Reserves Risk Management Safeguarding Children Safeguarding Vulnerable Adults Scientific Advisory Board Staff Mobile Phone Social Media and MOeratIon Health and Safety Home Working Legacies Management Trust88 Recruitm8nt Volunteer Whistleblowing Page 4
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) BBS UK has the following Information Security policies in place.. Bring Your Own Devi Conlidenliality Data Protection Data Quality Data Retention and Disposal Schedule Dat8 Security Email Use Handling of DBS Certificate Information Information Security Reporting and Auditing Information Sharing Privacy Noli Subject Access Request. Record Keeping (Data Relenlionl BBS UK has the following handbooks in place.. Health & Safely Handbook Information Govemance Handbook Staff Handbook Additional quality assurances BBS UK has Cyber Essentials Certification which is an official UK wide government-backed scheme that provides prolectson against the most common cyber threats and demonstrates our commitment lo cyber security. BBS UK has completed and published NHS Digital'$ Data Security and Protection Toolkit, an online self-assessment tool that allows organisalions to measure their performance against the National Data Guardian's 10 data security standards and lo provide assurance they are practising good data security and personal information handling. BBS UK has achieved PIF TICK accreditation following a thorough application and assessment prosS. The PIF TICK is a mark of quality and demonstrates that our heatth information has been through a professional and robust production process. Disclosure and Barring Service checks IDBSI are carried out prior to commencement of employment, trusteeship, and volunteering duties, where 8ppropriale and in line with statutory requirements. Child Protection Training and Safeguarding Vulnerable Adults Tmining is undertaken by those working or volunteering with children, young people andlor vulnerable adults, their line managers and their governing board. Page 5
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) How we look after and safeguard infomiation BBS UK aims to provide members and patients with the highest quality support and information and lo do this we need lo collect, process and store information. BBS UK processes and stores information in accordance with.. The Data Protection Act 2018 incorporating UK GDPR The Human Rights Act 1998 The Common Law Duty of Confidentiality The Caldicott Principles NHS Code of Pracliee on Confidentiality BBS UK maintains compliance via.. Estsblished and routinely maintained policies and procedures for the effective and secure management of information assets and resources Annual audits of its information and IT security arrangements Effective confi'dentiality and security pCticeS promoted to staff through policies, procedures and training Incident reporting procedures and moniloringlinvesligalion of all reported InStanS of actual or potential breaches of confidentiality and security BBS UK is registered with the Information Commissioner's Office IICOI which ensures BBS UK comply with the Data Protection Act 2018 and GDPR regulations are processing personal infotmalion in a fair and transparent manner For this reporting period, BBS UK reported no breaches in security and no 'near misses,. Objectives and Activities BBS UK strives lo bring together through our projects and services, support lo our members. BBS UK Trustees have regard lo the Charity Commission's public benefit guidance when exercising any powers or duties to which the guidan is relevant. The Trustees always ensure that the projects and services we undertake are in line with our charitable aims and objectives. The main objectives of Bardel-Biedl Syndrome UK are.. To preserve and protect the heaf(h and promote the welfare of persons affected by Bardet-Biedl syndrome and their families. To advan the education of the medical and educational professions and the general public about Bardel-Biedl syndrome and ils implications for the family, and to promote research for the public benefit in all aspects of that subject and lo publish the useful results. Page 6
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) The main activities the charity undertakes in pursuance of its objectives for the public benefit are.. Advi servi supporting members with accessing local support across the areas of health, education, social care, and benefits. BBS Clinic Support Team providing support, facilitation, and advocacy ServIS to NHS multi-disciplinary clinics. Infomialion booklets available in multiple formats, including.. Medical Information Booklet Introducing Bardet-Biedl Syndrome Booklet for Schools and Colleges My Life, My Future (Transition Handbook) Annual family conference, bringing beneficiaries together with interested professionals and experts, to provide access to the latest research and to participate in tailored workshops Support given to, and engagement with, the BBS research community BBS UK website.. www.bbsuk.org.uk Regular newsletters and an annual Conferen report Social media (including Fabook, Twitter, YouTubel to facilitate the development of an online community Service User Advisory Board Young People's Group IYPGI Report from the Chair of BBS UK Emma Hughes, Ch8ir of BBS UK It Is a great honour to present my first Chairfs report for BBS UK. As a small, user-led charity, BBS UK continues to punch well above its weighl-delivering life-changing support lo individuals and families affected by Bardet-Biedl syndrome across the UK and beyond. The scale and depth of what has been achieved over the past year is nothing short of extraordinary. This success is rooted in the passion, expertise, and Ljnwavering commitment of our staff team, who provide vital information, practical help, and emotional support-often in very complex circumstances. On behalf of the Board, I would like lo thank each one of them for their dedication and hard work. A Year of Progress and Renewal This has been a year of transition and renewal al Board level. I'd like lo express our sincere gratitude to Laura Dowswell, who stepped down as Chair in November 2024 after 9 years of dedicated setvice. Laura helped guide the organisalion through significant growth, and her legacy is evident in the strength and stability we enjoy today. We also thank Slefan Crocker, who stepped down after 9 years of valued contribution as a Iruslee, serving as Vice-chair and Chair in his time. We are very pleased to have welcomed Bilaal Ali to the Board, bringing new perspectives and energy to our work. Staffing changes also brought both challenge and opportunity. We said farewell to Samantha Serido, our Fundraising and Communications Ofticer, and thank her for her conlribulion. Page 7
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Strengthening Our Services Thanks to a transformational legacy gift, we are now in the position to expand our Advi servi with the recruitment of new Advice Workers-ensuring that we can meet growing need and support more individuals and families navigating complex health, social care, and education systems. Our Clinics Support servi continues to be a cornerstone of what we do. Now in our 15th year, the impact of this Servi is clear, with the professionalism and empathy of our staff frequently praised by patients, carers, and clinicians alike. Our Counselling Project, in partnership with Rareminds, continues lo offer spècialist ment81 health support. This free and confidential service recognises the emob'on81 impact of living with a rare condition. We are also proud of the ways we have supported digital inclusion through our IT Fund, helping individuals access education, work, and healthcare through technology-somelhing that is increasingly essential to wellbeing and independence. Together, these seNices reflect our commitment lo holistic, person-cenlred support-offering both practical help and emotional care when il matters most. Coming Togothgr as a Community A real highlight of the year was our Annual Conference in June 2024, which brought together over 130 allendees from across the UK and around the world for a packed programme of expert presentations and inspiring lived experience stories. This online event was a powerful reminder of the strength of our community, and of the imF)Ortance of slaying eonnecled-even at a distance. The overwhelmingly positive feedback showed just how valuable and empowering the event was for so many. Our commitment to Indusion also extended beyond our borders. We strengthened our international partnerships, with our Operations Manager, Tonia, representing BBS UK at BBS and rare disease summits in Chicago and Dublin, helping ensure that the voices of patients and families remain central in global conversations around BBS research and treatments. Looking Forward This reporting year also marked the conclusion of our three-year strategic plan. With thoughtful input from all our stakeholders, we are developing a new strategy to lake us forward with confidence, sustainability, and clarity. We will continue lo champion the voices of those with lived experience, expand our reach, and advocate for improved care and understanding of Bardel-Biedl syndrome. A Final Thank You As I reflect on my first year as Chair, I feel incredibly proud to be part of this vibrant, compassionate, and determined community. To our staff, thank you for your skill and care. To our members, families, volunteers, fundraisers, and partners, thank you for the trust you place in us and the energy you bring. And lo my fellow trustees, thank you for your support and guidance. Everything we do is poWed by people-people who care deeply, give generously, and believe in better future for those affected by BBS. Together, we are not only delivering services and SUPF)Ort, we are building connections, confidence, and hope. Page 8
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Achievements and Performance Alms and Objectlves BBS UK'S strategy sets out our vision, mission and values and establishes our aims and objectives for the period, which are.. Improve communication with our service users Develop our support services and reduce iso18tion Empower our membership to achieve Strengthen governance and raise our profile Support research and understanding of BBS Following, is an overview of progress made towards these targets.. 1. Improvlng communlcatlon wlth our servlce users Database It is imF)Ortanl lo us that we reach 811 members of our community in ways that are accessible and acceptable to them, in line with our dat8 protection responsibilities, and in support of this, we have Continued to develop our use of Charitylog (data management system) across all services. This has supported and improved internal and extemal communications and has improved the quality and accuracy ofour dats. Social Media We have increased our engagement and reach on social media.. Facebook Page Followers: 107915.17% increase) Facel0k IClos8dl Groups" Membg15.' 576 88S UK 44813.9010 increa581 BBS Adults Social Group 74 Ireland Regional Group Instagram Followers.. X Followers.. Linkedln Followers.. 312136.8% increase) 52716.5% inereasel 231133.5% increase) 'BBS UK have three closed groups,. BBS UK, BBS Adults Social and Ireland Regional Group. Some individuals are members in multiple groups. Only statistics from the BBS UK closed group were recorded previously. NeVletterS Vve have produced bumper paper edib"ons, also available on CD and in PDF, Word and Plain Text fomials, alongside a digital Conference report. Website management The BBS UK website is continually updated with new and relevant information. To improve acssIbl11ty and keep all our aUdIenS informed, we have integrated a live social media feed directly onto the site. This ensures that even those who do not use social media platforms ean stay up lo date with our latest news, updates, and community highlights in real lime. Page 9
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) 2. Develop our support services and reduce isolation This aspect of our work is of vital importance and following are some of the ways we have mel our targets across the year.. Advice Service As we enter the fifth year of the BBS UK Advice Service, demand for support continues to grow. This year, our team has supported 125 individuals across 8 wide range of areas, including". Navigating the social care system Education support and advocacy Housing issues Accessing benefits Issues with College transport post-16 Future planning for both children and adults with BBS Over the past year, we've observed that cases are becoming increasingly complex, with local aLJthorities more frequently resisting requests for care and support, beyond the bare minimLJm. As a result, individual cases are taking longer lo resolve, and the overall workload has intensified. In total, we recorded 817 contscts through the service this year. Team Update Al the beginning of the year, Shirin transitioned into her new role as Patient Liaison Officer IPLOI for the London Children's Clinic. Following a gradual handover, Shirin is now fully focused on her PLO responsibilities and is no longer taking on advice cases, inevitably resulting in an increase in our waiting list. Despite this ch811enge, 2024 also brought positive developments. We were pleased to host another social work sludenl on a 704ay placement, which eoneluded successfully". "Rebecca, I came back to say thank you for the guidan you gave me in n7y first plaMent. Your commendah.ons helped me incredibly for the better." - London Metropolitan University, MA Social Work Student, 2024 Unfortunately, we have not been able to offer a placement in 2025, bul we hope to recommence the student placement programme in 202S. Thanks to a legaw grant, we have been able to recruit two new advisors, who joined the team in June 2025. We are delighted to welcome Alis and Beatrice, who bring with them a wealth of experience in social care and education. Their addition will significanUy enhan our capacity, streamline processes, and help reduce wailing times for those seeking support. Both are excited to begin working with and supporting the BBS community. Rareminds Counselling Service- Pilot Project We launched a specialised and bespoke counselling service project with Rareminds in June 2024, initially rolling it out as a pilot project in London lo help bridge the gap in access lo counselling for people with Bardet-Biedl Syndrome IBBSI. Following the SucsS of this pilot, BBS UK is delighted lo confirm that we will be expanding counselling support countrywide to more individuals with BBS who meet the eligibility criteria. Page 10
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) IT Equipment Scheme BBS UK conb'nues to run its IT Equipment Project, providing practical and financial support lo help individLJals PLJrchase essential devices such as laptops, tablets, and computers. The scheme aims lo support children and adutts in accessing education, medical and social care appointments, and social opportunities-all of which are vital for maintaining both mental and physical health, and for reducing feelings of isolation and loneliness. Feedback from recipients highlights the real-life Impact of the project.. I feel less isolated, and I can lake positive steps towards looking for employment." °18m incredibly happy 8s I c8n now contact other people, something I w8s unable to do before. l am going to set up a Facebook 8ccount to connect with others.. Vve are proud lo continue offering this vital support and look forward to helping more individuals overcome barriers to connection and opportunity in the coming year. Virtual Meet4Jps for Adults with BBS Our Zoom social meet-ups are especially important for those living with Bardet-Biedl Syndrome IBBSI who may feel isolated or are unable to meet others with similar lived experiences in person-particularly as our community is spread across the UK. The monthly sessions are participanl-led, providing a welcoming space for 10 to 15 people to meet online, chal about everyday life, and explore shared topics such as travel, transport, and of course, enjoy the occasional quiz. We are incredibly grateful to our facilitator, Maria, and all those who allend, for helping build a warm and inclusive virtual space for the BBS UK community. We look forward lo building this project over the year, following on from a successful in person meetup al Conference. Clinies Support Service Our Clinics Support Servits provides support, facilitation, and advocacy services to those attending specialised BBS clinics. Our Patient Liaison Officers IPLOI play an essential role within the NHS multi-disciplinary clinic framework, including facilitating access, advocating for patient-cenlred care, supporting continuity across services, and maintaining close relationships with healthcare professionals, liaising with patients lo maximise health outcomes. The number of new referrals into the service continues to increase year on year and, as demand rises, our team continues to deliver high-level, tailored support lo all new Servi users and their families. Across the reporting year. the team logged 2.889 actions or contacts on behalf of over 536 service users and provided support and facilitation services al approximately 60 clinics Ivirtual and face-to-facel across Birmingham and London. The team's presence at each clinic-from the point of diagnosis onw8rd-ensures that support is accessible and immediate. Our work is consistently highly regarded by NHS colleagues and NHS England and is frequenuy described as essential to the successful running of the BBS clinics service. The team continues lo develop and strengthen its transition service, offering enhanced support for young people and their families as they move from paediatric to adult services. This inVoeS coordination with the adult clinics Servi to ensure a smooth handover, continuity of care, and a positive first experienTr in adult services. We work closely with families lo ensure each young person is fully prepared for their first adult clinie appointment. Page 11
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Our PLO team collaborates with local authorities lo support the development and integration of Education, Health, and Care IEHCI plans for our young service users. We attend and contribute lo key meetings, ensuring that health needs are accurately represented and effectively met within wider care planning structures. Our team supports service users in understanding and accessing innovative treatments and clinical trials. By facilitating their involvement in this area, we empower Individuals to engage In inilialives that could meaningfully enhance their quality of life and overall care experience. Beyond the clinic setting, the Clinics Support Team provides ongoing support beeen appointments via email and telephone, ensuring continuity of care year-round. We recognise the emotional and psychological impact of living with a rare condition, and work lo provide reassuran, empathy, and guidance, especially during key transitions or limes of uncertainty. The team supports not just individuals with BBS, bul also their parents, carers, and families, acknowledging the vital role they play in care and decision-making. We offer practical advice and emotional support to help families feel confident and well-informed throughout the care journey. We also strive to ensure OLJr services are inclusive and accessible lo all. This includes providing culturally sensitive support, addressing language needs, and working lo reduce barriers that may prevent engagement with clinic services. Our work is rooted in collaborative practice, with strong relationships across the NHS mults.-diIplInary team. This inlegraled approach ensures holistic care and better outcomes for our service users. Patient evaluation data is consistently high, with 930A of patients rating the support reiVed from our team as 'Excellent'. Comments reiVed include.. "A team of remarkable people who help to reassure and guide you for the next year ahead." "BBS UK were very helpful and accommodating on managing people's conditions." "Very good and I fell supported. The clinic has kept me at peace about my BBS." "The support provided by BBS UK is a lifeline for us and the clinic is an important part of this support where our child's care is brought together." "Really well coordinated, it ran smoothly and the support team were helpful and empathetic.. "Excellent care, I was treated as an individual that not all care fils one bracket and that they are there for supporv, Conference 2024 We held an online conference on 8th June which was incredibly well attended and supported. We had 203 register lo attend the event with 130 joining us on the day. Of those who registered, 135 were based in the UK and 68 registered from across 26 eounlries. Included in our programme were presentslions from Dr Arlene Drack, who joined us from the US, and Professor Phil Beales, both of whom shared exciting updates about their gene therapy research. We also heard from Dr Elizabeth Forsythe about hyperphagia In BBS and a potential treatment, and were privileged to hear two personal perspectives about the lived experience of Bardet-Biedl syndrome, one of which focused on the sibling perspective. Page 12
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Conf 2024 Feedback 97Q/o fell better infomied about ongoing research into BBS 820/0 fell better informed about the management of BBS 76010 had greater awareness of the support and infomialion available 64'k fell more confident managing the challenges of BBS 760/0 fell more connected lo the BBS community 97D/o would attend or recommend attendan al a BBS UK event in future Comments received: "I was really doubtful that I would enjoy this Conferen as much because I like the community of our in-person conferences. However, I have to say that the quality of the information presented was fantastic. What l also liked was that My daughter with BBS was able to sit in on some of the presentations which normally she would not have been able to as she would have been out on the activity day. Thank you1 "Well done everyone that helped to organise or took part in presenting, what a fabLJlous jobl Really interesting, informative and professional. l especially look forward to hearing the personal perspectives, which are aayS inspiring and so heart-warming. Thank youl" Reglonal Group Ireland Our Ireland Regional Group continues to make meaningful progress in improving access lo healthcare, support, and information for people living with Bardet-Biedl syndrome across the island of Ireland. In 2024, the group carried out an audit of BBS patient access to healthcare services, highlighting key challenges such as fragmented care and the burden of multiple appointments. These findings are directly informing ongoing efforts to develop a dedicated multi-disciplinary team IMDTI clinic in Ireland. The group also formalised ils structure and future plans, strengthening its capacity lo advocate effectively and support families. Plans are undetway for a second Informats'on Day in October 2025, aiming to bring families and clinicians together for learning and connection. We are grateful to all those who continue to give their lime, energy, and expertise lo this work. The commitment of volunteers and supporters is driving real and positive change. 3. Empowor our membgrship to achigVO Health and Wellbeing Those living with BBS are likely to experien difficulties maintaining a healthy weight and often struggle with their mental health and general wellbeing and therefore BBS UK has a responsibility lo encourage a culture of positive health and wellbeing throughout its projects and servIs. Earlier we reported on our Rareminds Counselling Service project, our virtual 'meet-ups', our IT Equipment Fund, our Clinics Support servi and Annual Conference, all of which promote positive health and wellbeing in our community. During the year we also held a Young Person's Activity Weekend and a Social Event in London for adult service users. Page 13
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Our Young Person's Weekend in Birmingham, provided a variety of challenges, including a day at Bear Grylls Activity Centre and plenty of social lime to connect with others living with BBS. Parents found it invaluable having time with other parents who are on the same journey. For our older members a 0-daY event in London was built around attendance al Sight Village, an exhibition for people affected by sight loss, showcasing a wide range of technology and support services. We also visited the Natural History Museum and enjoyed meals out and social lime together. Service User Advisory Group We have esL9blished 8 Setvice User Advisory Group, to ensure that the voice and needs of the wider BBS community are accounted for and can directly feed into strategy and service improvements. The group meets every 2-3 months and consists of up to six BBS patients and six parents with experience of using BBS UK servIs. Over the past year, the SUAG members have helped review our newsletters, the online conference programme lincluding accessibility of malerialsl, the conference report, and the Community Audit 2024. The group also shared ideas for the 2025 annual conference, upcoming newsletters, and fundraisers. 4. Strengthen governance and raise our profile We have continued growing and developing our Board of Trustees, with a focus on filling gaps identified in a skills audit. For the first time we engaged a specialised recruitment organisalion lo fill our Chair position and were delighted to welcome Emma Hughes lo our Board al our AGM in November 2024. We also welcomed new Trustee, Bilaal Ali to our Board. The Board now includes professional experience and skills across managemenuleadership, finance, project management, contract management, education, medicallgenelics, human resources, and markelinglmedialPR. We currently have I0 spaces unfilled and are seeking skills and experien as follows.. Legal including charity law Marketing, media, PR Fundraisinglfunding Human Resourceslemploymenl legislation This reporting year brought us lo the end of our three year strategic plan and we invested considerable time in its review and the development of a strategy for the next three years. We are in the process of finalising it and aim lo publish it towards the Autumn of 2025. In October 2024, we attended the European Cilia research meeting in Dublin, during which our Operations Manager, gave a presentation about BBS UK and the importance of collaboration, and patient and patient group engagement in research. In March 2025, Tonia attended a BBS summit in Chicago, connecting with key stakeholders in the global BBS research network. Page 14
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) 5. Support research and understanding of BBS BBS UK continues lo play a vital role in fostering, supporting, and influencing research related lo Bardet-Biedl syndrome. We are committed to ensuring that people living with BBS are meaningfully involved In all stages of the research process, from shaping questions lo reviewing outcomes. Throughout the year, we have supported a number of research inilialives through.. Letters of support for funding applications Acting as co-applicants on grant proposals Assisting in the development of research protocols and patient information materials to ensure accessibility and clarity for participants Disseminating research findings lo our community via newsletters, the website, and at key events Providing input into the design of research questions, particularly those that address lived experience, service improvement, or unmet needs Welcoming researchers al our Annual Family Conference, providing them with space lo engage with attendees, gather insight, and share their work in an accessible and collaborative environment To ensure scientific rigour and effective collaboration with the academic and pharmaceutical sectors, OLJr Scientific Advisory Board meets two lo three limes a year. The Board.. Keeps BBS UK informed of the latest scientific and clinical developments Provides oversight of research activity and pharma engagement, ensuring alignment with our values and the needs ofthe BBS community Contributes to the development and review of educational materials and publications Offers expert input into the programme and content of our Annual Family Conferen, helping lo ensure it reflects current priorities in BBS research and treatment In addition, we maintain 8Ctive Connections with BBS organisations internationally and other UK-b8sed mre disease groups, including through memberships and collaborations. These relationships allow us to slay informed about emerging research, influence strategic research priorities, and advocate for opportunities that are inclusive of people living with BBS. Summary In conclusion, this year has been one of meaningful progress and connection for BBS UK, as we continued lo deliver on the goals outlined in our three-year strategic plan, whilst developing our plan for the next three years. We have improved communication through inclusive, accessible channels,. expanded and diversified our support servi5., created new opportunities for empowemient., strengthened our g0Veman slruclures., and deepened engagement with research and scientific understanding of Bardel-Biedl Syndrome. Our sincere thanks go to our staff, trustees, volunteers, and partners whose dedication and collaboration make this work possible. Their efforts have enabled us lo meet growing needs with compassion, innovation, and resilience. As we look ahead, we remain commilled to continuous improvement and long-lerm sustainability, ensuring we support every individual and family living with BBS lo live well, feel connected, and thrive. Page 15
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Fundraising Review Introductlon The national fundraising landscape continues lo reflect a challenging macroeconomic climate, with rising living costs and donor fatigue placing pressure on income generation across the third sector. Nevertheless, BBS UK experienced a strong fundraising year, significantly outperfomiing our income targets. This was driven laryely by a transformational legacy donation and a series of communily-led initiatives that exeded expectations. Total fundr8ising income for the year exceeded £170,000, equating lo more than 200 /• of our original budget. Notably, excluding the legacy gift, income still reached 92% of target a remarkable achievement given the external environment. Slatulory funding from the NHS England continues lo support our core Clinics Service, providing stable income. Fundraising Goals and Strategy This year, our primary goal was to further diversify income streams while developing our fundraising strategy. We successfully mel our corporate giving target and exceeded expectations in individual, regular, and legacy giving. Currently, we are finalising our strategy, with a clear focus on expanding community fundraising, corporate partnerships, and regular giving in the year ahead. It continues lo be our aim lo register with the Fundraising Regulator, reinforcing our commitment to best-practi and ethical fundraising. Community Fundraising The dedication of our community fundraisers continue5 to inspire us. From extreme physical challenges to inlimale family-led gatherings, every event made a difference. This yearfs highlights include.. Michael O'sullivan raised nearly £7:500, whilst training for the London Marathon. Unfortunately, Michael sustained an injury, and his place has rolled over lo 2026", we wish him the best of luck with his training, and look forward to cheering him on, over the finish line. Finlan Cruse raised over £4,500 completing the Royal Canal Extreme Challenge, running 150km In 24 hours. Community events including the Sloane Family Afternoon Tea, Knitting Nannies, St Edwards Church fundraiser, Graeme Roache's Golf Toumamenl, Wilkie Family s Kill Walk and many more. Vve saw a surge in engagement following a call for help al our conference, leading to a noticeable uptick in new event planning, with skydive, bungee, and running challenges already scheduled. Friends of BBS UK The Friends of BBS UK regular giving programme lSed over £11,000, an increase of more than £1,000 from the previous year. Promoting Regular Giving will remain a priority for the year ahead, lo promote long-term sustainability. Page 16
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Phamiaceutical Industry Maintaining open, ethical and transparent relationships with pharmaceutical industry partners is an important element of BBS UK'S funding, g0Veman and strategic approach. These partnerships are managed in accordance with the guidelines of the Association of the British Pharmaceutical Industry IABPII and our internal policies. We are deeply grateful to Rhythm Pharmaceuticals 1£10,0001 and Axovia Therapeutics 1£5,0001 for their generous support of the BBS UK conferen through unrestricted educational grants. In line with ABPI guidelines, these funds supported non-promotional educational aclivilies, helping to increase awareness and understanding of Bardel-Biedl syndrome among patients and carers. Trusts and Foundations Grants and tru51 income, received into our account, totalled £19.150, representing 59QA of our target,. our heartfelt thanks go lo.. The National Lottery Community Fund Sir Jules Thorn Charitable Trust Douglas Arter Foundation Kaye Charitable Trust The Eveson Trust We are pleased to share that we have been awarded a three-year grant from BBC Children in Need, which will commence in the next financial year. In line with accruals accounting principles, this grant has been recognised in the current year's accounts. We continue to strengthen our funding pipeline, with a focus on increasing both the scale and sustainability of our grant income in the years lo come. Legacy Giving This year saw the extraordinary impact of a legacy gift from the estate of Jackie Farrington. The BBS UK Board of Trustees has designated the funds lo be used across three years lo support the development of the Advice Servi, a cornerstone of support for Individuals and families living with Bardet-Biedl syndrome. We are deeply grateful lo Jackie and her family for this generous gift, which will have far reaching benefits for our community. Looking ahead, we will build on this momentum by launching our fi'rst legacy awareness campaign, helping supporters understand the lasting impact of gifts in wills. Legacy giving represents a vital opportunity to strengthen the future of BBS UK, and we are committed lo ensuring our community has the information and inspiration needed to consider this special form of support. Fundralslng Income Breakdown Cotporale Giving Eventslcampaigns Gift Aid IndNidual Gwing Regular Giving Legacy GranlslTrus15 Total Income £ 16,588 £ 18,078 £ 4,391 £ 4,706 £ 11,121 £ 97,052 £ 33,518 £185454 Page 17
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Campaigns and Communications on again, our internally created campaigns received limited uptake, with the 'Counldown lo Conferen, campaign generating just £280. As in previous years, community-led events vastly oulperfomi branded campaigns. Our strategic focus will shift towards encouraging and empowering fundraisers, rather than leading ntralIsed campaigns. To improve engagement and accessibility, we are trialling membership of the Run for Charity platform, which provides aCsS lo 800+ running events, including marathons, fun runs, muddy and inflatsble events, enabling us lo cover registration costs with ease and streamlining event regislralion. Summary In a year where many charities continued to fa financial uncertainty and increased pressure on fundraising, the BBS UK community responded with remarkable generosity, determination, and heart. Thanks lo the unwavering commitment of our fundraisers, donors, partners and volunteers, we exceeded expectations and secured income that will directly benefit those living with Bardet-Biedl syndrome. This susS is about much more than figures, every act of support reflects the strength and solidarity of our rare disease community. We are especially grateful for those who gave their time, shared their stories, and rallied others to gel involved their dedication has been truly inspiring. To everyone who has supported us, in ways both big and small, we offer our heartfelt thanks. Your generosity has helped sustain vitsl setvices and given us the confidence to plan ambitiously for the future. We remain firmly committed lo using every pound raised wisely, and to building on this yeaff s achievements with inlegrily, purpose and care. Treasurer's Report Tazeem Abbas Treasurer As we have heard, this year marked a period of financial stability and operational progress for BBS UK. Alongside strong fundraising and prudent rinancial management, key developments included.. The change of accountants at the end of the financial year from Amicus Accountancy Ltd lo Westcotts Chartered Accounlanls. The complets'on of Kevin Sales, tenure as bookkeeper in March,. Kevin has been a valued supporter of the Charity for many years, and we give our heartfelt thanks for his dedication and servi. Our finance policy remains under review and will be priorilised in the next quarter. BBS UK'S financial period runs from 1st April 2024 to 31st March 2025, with accounts prepared on an accrual basis. Page 18
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) As of the 31st March 2025, total Charity funds stood at £302.739 12023-24". £201,667). During the year, transfers of £18,114 were made from the General Fund to designated funds.. £11,451 to the Annual Family Weekend and Conference £1,455 to the IT Equipment Fund nel £750 to the Rareminds Counselling Project, comprising £13,650 transferred to the designated fund, and £12,900 returned to the General Fund, following receipt of a restricted grant. £4,458 to Fixed Assets, reflecting capitslised expenditure. General Funds increased lo £267,20312023-24.' £190,949) with a surplus for the year of £76,254 Designated Funds stood at £9.86812023-24. £7,928.) Restricted Funds stood al £25,66812023-24.. £2,790). The Trustees provided support from designated funds during the financial year.. Chris Humphreys Memorial Fund.. £2,167123-24.' £1,407) Annual Family Weekend and Conference". £9,498123-24." £23,951) IT Equipment Fund.. £1,197123-24'. £2,178) Rareminds Counselling Project.. £750.00 Reserves Policy and Going Concem Trustees regularfy review budget and reserves, monitored monthly and reported quarterly, to ensure that the appropriate levels are maintained considering the main risks to the organisalion and future developments. Trustees have agreed unrestricted free reserves should be sufficient lo cover months expenditure. Al 31 st March 2025, the lotsl unrestricted funds were £277.071 including £9,868 of designated funds remaining at year end. After year*nd as part of the 2025-26 budget approval, the trustees designated £114,000 from the General Fund towards the following key priorities.. £3,000 to the Chris Humphreys Memorial Fund, lo support newly diagnosed individuals and their families lo access our events based on assessment of need. £5,000 lo the IT Equipment Fund, to improve digitsl access to services. £12,000 to the Rareminds Counselling Project, providing specialist counselling for BBS patients. £94,000 to fund the Advice servi over Ihree-years"12025-20281 This leaves eslimaled free reserves of £157,933, equivalent to 5.5 months, core expenditure. The trustees consider that the Charity has adequate resources lo continue its activities for the foreseeable future and therefore deem Il a going concern. 'Designation of Unrestricted Legacy for Advice Service Al the end of 2024-25, Trustees designated £94,000 from an unrestricted legacy gift to support the Advice Service over three years. This strategic designation supports immediate growth and capacity building, while the Charity continues to seek sustainable funding sources. Although this designation provides temporary financial support, il does not fully cover the costs of the Advice Servi, and additional funding is sought. These funds remain unrestricted and may be reallocated if neSsary, in line with maintaining appropriate free reserves and financial stability. Page 19
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) Management of risk The Trustees have identified that the main risks lo the charity are.. The NHS England clinic contract Failing lo secure sufficient funds The loss of income from redUd donations The loss of key personnel Summary This year has been one of financial strength and strategic progress for BBS UK. Thanks to generous fundraising support, a significant legacy gift, and improved financial processes, we are well-positioned to meet current needs and invest in future growth. The Board remains committed lo strong governance and prudent reserves management, ensuring our long-term sustainability. We are deeply grateful lo our dedicated Iruslees, staff, volunteers, fundraisers and donors, whose continued support makes our work possible. Statement of Trustees. Responsibilities The Trustees are responsible for preparing the Trustees, report and the financial statements in accordan with the United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice) and applicable law and regulations. The law applicable lo charities requires the Trustees lo prepare financial statements for each financial year which give a true and fair view of the slate of affairs of the Charity and of the incoming resources and application of resources of the Charity for that period. In preparing these financial statements, the Trustees are required to.. select suitable accounting policies and then apply them consistently., observe the methods and principles in the Charities SORP., make judgements and eslimales that are reasonable and prudent", state whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements., and prepare the financial statements on the going concern basis unless it is Inappropriate to presume that the Charity will continue In business. The Trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy al any lime the financial position of the Charity and enable them lo ensure that the financial ststemenls comply with the Charities Act 2011, the Charities (Accounts and Reports) Regulations 2008, and the provisions of the conslitulion. The Trustees are also responsible for safeguarding the assets of the Charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. The Trustees are responsible for the maintenance and integrity of the corporate and financial information included on the charitable company's website. Legislation governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions. Page 20
Bardet-Biedl Syndrome UK Trustees, Report Icontinued) The annual report was approved by the Trustees of the Charity on behalf by.. 2319125 and signed on its Emma Hughes Chair and Trustee Page 21
Bardet-Biedl Syndrome UK Independent Examiner's Report to the trustees of Bardet-Biedl Syndrome UK I report to the Trustees on my examination of the accounts of Bardet-Biedl Syndrome UK for the year ended 31 March 2025. Responsibilities and basis of rèport As the Charity Trustees of Bardel-Biedl Syndrome UK you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 I'lhe Act'i. I report in respect of my examination of the Bardel-Biedl Syndrome UK'S accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 14515llbl of the Act. Independent examiner's statement Since Bardet-Biedl Syndrome UK'S gross income exceeded £250.000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that l am qualified to undertake the examination because l am a member of the ICAEW, which is one of the listed bodies. I have completed my examination. I confimi that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect.. 1. accounting records were not kept in respect of Bardet-Biedl Syndrome UK as required by section 130 of the Act., or 2. the accounts do not accord with those records., or 3. the accounts do not comply with the accounting requirements conceming the form and conlenl of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a 'true and fair view, which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination lo which attention should be drawn in this report in order to enable a proper understanding of the accounts lo be reached. GLal Catherine Williams FCA DChA Independent Examiner Weslcotts (SWI LLP Chartered Accountants & Statutory Auditors 47 Boutport Street Barnslaple Devon EX31 1SQ Page 22
Bardet-Biedl Syndrome UK Statement of Financial Activities for the Year Ended 31 March 2025 Unrestricted funds Restricted funds Total 2025 Total 2024 Note Incomg and Endowments from: Donations and legacies Charitable activities Other trading activities Investment income Other income 140,436 223,444 30,018 170,454 223,444 130,082 181,107 2,534 664 1,400 850 1,000 850 1,000 Total income 365,730 30,018 395,748 315,787 Expenditure on: Raising funds Charitable activities 11,9191 285,617 11,9191 292.757 11,0941 278.072 7,140 Total expenditure Net income 287,536 7,140 294,676 279,166 78,194 22,878 101,072 36,621 Net movement in funds 78,194 22,878 101,072 36,621 Reconciliation of funds Total funds brought fotward 198,877 2,790 201,667 165,046 Total funds carried forward 20 277,071 25,668 302,739 201,667 All of the Charity's activities derive from continuing operations during the above I0 periods. The funds breakdown for 2024 is shown in note 20. The notes on pages 25 to 38 form an integral part of these financial statements. Page 23
Bardet-Biedl Syndrome UK (Registration number: 1181244 Balance Sheet as at 31 March 2025 2025 2024 Note Flxed assets Tangible assets Current assots Debtors Cash at bank and in hand 15 5,137 3,241 16 17 91,502 226,878 19,861 194,231 318,380 214,092 Credltors: Amounts falllng due wlthln one year 20,778 15,666 Net current assets 297,602 198,426 Net assets 302,739 201,667 Funds ofthe Charity: Restricted income funds Restricted funds 25,668 2,790 Unrestrieted income funds Unreslricled funds 277,071 198,877 Total funds 20 302,739 201,667 The financial statements on pages 23 to 38 were approved by the Trustees, and authorised for issue on .....?.¥1g12S..... and signed on their behalf by.. Emma Hughes Trustee The notes on pages 25 to 38 form an integral part of these financial statements. Page 24
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 1 Aeeounting policies Statement of compliance The financial ststemenls have been prepared in accordance with the second edition of the Charities Statement of Recommended Practi issued in October 2019, the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland IFRS 1021 and the Charities Act 2011. Basis of preparation Bardet-Biedl Syndrome UK meets the definition of a public benefit entity under FRS 102. The accounts Ifinancial ststemenlsl have been prepared under the historical cost convention with items recognised at cost or transaction value unless otherwise ststed in the relevant notelsl to these accounts. The financial ststemenls have been prepared in steding which is the functional currency of the charity. Going concern The Trustees consider that there are no material uncertainties about the Charity's ability to continue as a going concern. Income and endowments Voluntary income including donations, gifts, legacies and grants that provide core funding or are of a general nature is recognised when the Charity has entitlement to the income, il is probable that the income will be reiVed and the amount can be measured with sufficient reliability. Donations and legacies Donations and legacies are recognised on a receivable basis when receipt is probable and the amount can be reliably measured. Grants rgcgivablg Grants are recognised when the Charity has an entitlement to the funds and any conditions linked lo the grants have been met. Where performance conditions are attached to the grant and are yel lo be mel, the income is reeognised as a liability and included on the balance sheet as deferred income lo be released. Expendlture All expenditure is recognised once there is a legal or conslruclive obligation to that expenditure, It is probable settlement is required and the amount can be measured reliably. All costs are allocated lo the applicable expenditu heading that aggregate similar costs lo that category. Where costs cannot be directly attributed to particular headings they have been allocated on a basis consislenl with the use of resources, with central staff costs allocated on the basis of lime spent, and depreciation charges allocated on the portion of the asset's use. Other support costs are allocated based on the Spread of staff costs. Raising funds These are costs incurred in attracting voluntsry income, the management of investments and those incurred in trading activities that raise funds. Page 25
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) Charitable activitiTgS Charitable expenditure comprises those costs incurred by the Charity in the delivery of ils activities and services for ils beneficiaries. It includes both costs that can be allocated directly lo such activities and those costs of an indirect nature necessary to support them. Support costs Support costs include central functions and have been allocated to activity cost categories on a basis consistent with the use of resour$, for example, allocating property costs by floor areas, or per capita, staff costs by the time spent and other costs by their usage. Taxatlon The Charity Is considered to pass the lesls set out in Paragraph 1 Schedule 6 of the Finance Act 2010 and therefore il meets the definition of a charitable company for UK corporation tax purposes. Accordingly, the Charity is potentially exempt from taxation in respect of income or capital gains reiVed within categories covered by Chapter 3 Part 11 of the Corporation Tax Act 2010 or Section 256 of the Taxation of Chargeable Gains Act 1992, to the extent that such income or gains are applied exclusively lo charitable purposes. Tangible fixed assets Individual fixed assets are Inilialty recorded at cost, less any subsequent accumulated depreciation and subsequent accumulated impairment losses. Depreciation and amortisation Depreciation is provided on tsngible fixed assets so as lo write off the cost or valuation, less any eslimaled residual value, over their expected useful economic life as follows.. Asset class Fixtures, fittings and equipment Depreciation method and rate 33.3Qk Straight line Cash and cash equivalents Cash and cash equivalents comprise cash on hand and call deposits, and other short-term highly liquid investments that are readily convertible to a known amount of cash and are subject lo an insignificant risk of change in value. Fund structure Unrestricted income funds are general funds that are available for use at the Trustees discretion in furtherance of the objectives of the Charity. Restricted income funds are those donated for use in a particular area or for specific purposes, the use of which is restricted to that area or purpose. Page 26
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) Pension$ and other post retirement obligations The Charity operates a defined contribution pension scheme which is a pension plan under which fixed contributions are paid into a pension fund and the Charity has no legal or constructive obligation to pay further contributions even if the fund does not hold sufficient assets lo pay all employees the benefits relating lo employee service in the current and prior periods. Contributions lo defined contribution plans are recognised in the Statement of Financial Activities when they are due. If contribution payments exceed the contribution due for service, the excess is recognised as a prepayment. Financial instruments Classification Financial assets and financial liabilities are recognised when the Charity becomes a party lo the contractual provisions of the inslrumenl. Financial liabilities and equity instruments are classified according lo the substance of the conlraclual arrangements entered into. An equity instrument is any contract that evidences a residual interest in the assets of the Charity after deducting all of its liabilities. Recognition and measurement All financial assets and liabilities are initially measured at transaction price (including tmnsaelion costsl, except for those financial assets classified as at fair value through profit or loss, which are initially measured at fair value (which is normally the transaction price excluding transaction costs), unless the arrangement constitutes a financing transaction. If an arrangement conslitules a financing trans8Ction, the financial asset or financial liability is measured al the present v81ue of the future payments discounted al a market rate of inteosl for 8 similar debt instrument. Financial assets and liabilities are only offset in the statement of financial position when, and only when there exists a legally enforable right to set off the recognised amounts and the Charity intends either lo settle on a nel basis, or to realise the asset and sellle the liability simultsneously. Financial assets are derecognised when and only when al the contractual rights to the cash flows from the financial asset expire or are settled, bl the Charity transfers lo another paty subslanlially all of the risks and rewards of ownership of the financial asset, or cl the Charity, despite having retained some, but not all, significant risks and rewards of ownership, has transferred control of the asset lo another party. Financial liabilities are derecognised only when the obligation specified in the contract is dIharged, cancelled or expires. Page 27
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 2 Income from donations and legacies Unrestricted funds Gengral Restricted funds Total 2025 Donations and Gifts Legacies Gift aid Grants Received Regular Giving 24,372 97,052 4,391 3,500 11,121 140,436 24,372 97,052 4,391 33,518 11,121 30,018 30,018 170,454 Unrestricted funds General Total 2024 Donations and Gifts Gift aid Grants Received Regular Giving 97,695 3,931 18,500 9,956 97,695 3,931 18,500 9,956 130,082 130,082 3 Income from charitsble activities Unrestricted funds General Total 2025 Event Funding NHS - Commissioned Services 18,236 205,208 18,236 205,208 223,444 223,444 Unrestricted funds General Total 2024 Event Funding NHS - Commissioned Services 10,000 171,107 10,000 171,107 181,107 181,107 Page 28
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 4 Income from other trading activities Unrestricted funds General Total 2024 Sale of Merchandise Fundraising Proceeds 942 1,592 942 1,592 2,534 2,534 5 Investment income Unrestricted funds General Total 2025 Interest receivable on bank deposits 850 850 Unrestrlcted funds General Total 2024 Interest re1vable on bank deposits 664 664 6 Other income Unrestricted funds General Total 2025 Other income 1,000 1,000 Unrestricted funds General Total 2024 Other income 1,400 1,400 Page 29
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 7 Expenditure on raising funds a) Costs of generating donations and legacies Unrestricted funds General Total 2025 Donations expenses 433 433 Unrestricted funds General Total 2024 Donations expenses 289 289 b) Costs of trading activities Unrestricted funds General Total 2025 Other trading activities 1,486 1,486 Unrestricted funds General Total 2024 Other trading activities 805 805 Page 30
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 8 Expenditure on charitable activities Unrestricted funds Gengral Restricted funds Total 2025 Note Charitable activities Allocated support costs 242,080 43,537 7,140 249,220 43,537 285,617 7,140 292,757 Unrestricted funds General Restricted funds Total 2024 Note Charitable activities Allocated support costs 230,419 47,365 277,784 288 230,707 47,365 288 278,072 Page 31
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 9 Analysls of support costs Support costs allocated to charitsble activities Support costs Total 2025 Total 2024 Office expenses Staff costs Travelling Insurance Telephone and fax IT security and support Database Website Printing, postage and stationery Exhibition Fees Trade subscriptions Sundry expenses Accountancy fees Partial Exemption VAT disallowed Independent examiner's fee Depreciation 6,434 5,238 6,648 1,994 1,480 4,678 675 733 552 1,123 929 623 4,774 6,434 5,238 6,648 1,994 1,480 4,678 675 733 552 1,123 929 623 4,774 3,110 26,734 534 495 822 1,798 150 1,550 344 928 1,120 399 5,280 1,429 2,672 5,094 2,562 5,094 2,562 43,537 43,537 47,365 10 Net incomingloutgoing resources Net incoming resources for the year include.. 2025 Depreciation of fixed assets 5,124 11 Trustees remuneratlon and expenses No Trustees, nor any persons connected with them, have received any remuneration from the Charity during the year. During the year expenses were reimbursed lo 3 Trustees totalling £830 12024.. £4381 in respect of travel costs. Page 32
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 12 Staff Costs The aggregate payroll costs were as follows.. 2025 2024 Staff costs during the year were: Wages and salaries Social security costs Pension costs 186,050 17,060 10,022 167,127 14,331 8,642 213,132 190,100 The average number of persons employed by the Charity during the year was as follows.. 2025 No 2024 No Charitable activities No employee received emoluments of more than £60,000 during the year 13 Independent examinerfs remuneration 2025 2024 Examination of the financial statements 5,094 2,672 14 Taxation The Charity is a registered charity and is therefore exempt from taxation. Page 33
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 15 Tangible fixed assets Furnlture and equipment Total Cost Al 1 April 2024 Additions 3,241 4,458 3,241 4,458 Al 31 March 2025 7,699 7,699 Depreciation Charge for the year Al 31 March 2025 2,562 2,562 2,562 2,562 Net book value Al 31 March 2025 5,137 5,137 Al 31 March 2024 3,241 3,241 16 Debtors 2025 2024 Trade debtors Popayments Other debtors 88,193 2,996 313 17,867 1,994 91,502 19,861 17 Cash and cash equivalents 2025 2024 Cash at bank 226,878 194,231 Page 34
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) 18 Creditors- amounts falling due within one year 2025 2024 Trade creditors Taxation and social security Other creditors Accruals 375 15,801 2,142 2,460 2,768 11,063 1,835 20,778 15,666 19 Pension and other schemes Defined contribution pension scheme The Charity operates a defined contribution pension scheme. The pension cost charge for the year represents contributions payable by the Charity to the scheme and amounted lo £10,022 12024 £8,642) 20 Funds Balance at Balance at 31 March 2025 Incoming Resources resources expended 2024 Transfers Unrestricted funds General General Funds Chris Humphreys Memorial Fund conferen Weekend IT Equipment Fund Fixed Assets Rareminds Counselling 190,949 365,730 1271,3621 118,1141 267,203 2,593 1,049 1,045 3,241 12,1671 19,4981 11,1971 12,5621 750 426 3,002 1,303 5,137 11,451 1,455 4,458 750 198.877 365,730 287,536 277,071 Restricted funds Jeans 4 Genes The National Lottery (Rareminds Counselling Project) The Eveson Trust (Transition Projectl BBC Children in Need 2,790 2,790 13,650 15,1851 8,465 2,000 14,368 11,9551 45 14,368 2,790 30,018 17,1401 25,668 Page 35
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) Balance at 1 April 2024 Balance at 31 March 2025 Incoming Resources resources expended Transfers Total funds 201,667 395,748 1294,6761 302,739 Balance at 1 April 2023 Balanee at 31 March 2024 Incomlng Resources resources expended Transfers Unre$trieted funds General General Funds Chris Humphreys Memorial Fund Conference Weekend IT Equipment Fund Fixed Assets 129,800 315,787 1251,3421 13,0961 190,949 3,000 25,000 3,223 1,145 11,4071 123,9511 12,1781 1,000 2,593 1,049 1,045 3,241 2,096 181,968 315,787 1278,8781 198,877 Restricted funds Jeans 4 Genes 3,078 12881 2,790 Total funds 165,046 315,787 1279,1661 201,667 Page 36
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) Unrestricted Funds General Funds General funds are donations and other incoming resources receivable or generated for the objects of the charity without a specific purpose and which the charity may use for ils own purpose at its discretion. Chris Humphreys Memorial Fund This subsidy fund was sel up in 2020 to support newly diagnosed individuals and their families lo access our events. Conference Weekend The BBS UK Conference Weekend brings together over 200 service users and interested professionals for a weekend of learning and sharing experiences. IT Equipment Fund This fund was sel up in 2021 in response lo an increasing need for people with BBS to a¢sS services through means of digital technology based upon an assessment of need. Flxed Assets Fixed Assets which cannot be used to fund expenditure without being sold. Rareminds Counselling Service BBS UK is working with Rareminds to provide specialised counselling sessions for those with BBS, who would otherwise find il difficult lo access the support needed. estricted Funds Jeans 4 Genes Funding lo facilitate our work with young people The National Lottery {Rareminds Counselling Project) Funding for our Rareminds Counselling Servi The Eveson Trust (Transition Project) Funding for development of transition project lo support young adults as they Iransits'on to adult health care. 21 Analysis of net assets between funds Unrestricted funds General Total funds at 31 March 2025 Restricted funds Tangible fixed assets CLJrrent assets Current liabilities 5,137 292,712 120,778 277,071 5,137 318,380 20,778 25,668 Total nel assets 25.668 302,739 Page 37
Bardet-Biedl Syndrome UK Notes to the Financial Statements for the Year Ended 31 March 2025 (continued) Unrestricted funds General Total funds at 31 March 2024 Restricted funds Tangible fixed assets Current assets CLJrrent liabilities 3,241 211,302 15,666 3,241 214,092 15,666 2,790 Total nel assets 198,877 2,790 201,667 22 Related party transactions There were no related paty transactions in the year. Page 38