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, set￿tary
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 ServI￿S 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 FOn￿ard 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.
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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 I￿0 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 chan￿S 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 MO￿eratIon
Health and Safety
Home Working
Legacies Management
Trust88 Recruitm8nt
Volunteer
Whistleblowing
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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
pro￿sS. 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 p￿CticeS promoted to staff through policies, procedures and
training
Incident reporting procedures and moniloringlinvesligalion of all reported InStan￿S 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 ServI￿S 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 Fa￿book, 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 poWe￿d 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)
Facel￿0k 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.
NeV￿letterS
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
ac￿ssIbl11ty and keep all our aUdIen￿S 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 pla￿Ment. 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 Suc￿sS 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 inVo￿eS
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.
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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 be￿een 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.-di￿IplInary
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 re￿iVed from our
team as 'Excellent'. Comments re￿iVed 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 a￿ayS 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 servI￿s.
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.
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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 servI￿s. 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 I￿0 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 servi￿5., 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 ex￿eded 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 aC￿sS 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 su￿sS 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 ne￿Ssary, 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 redU￿d 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 I￿0 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 re￿iVed 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
re￿iVed 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 enfor￿able 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 dI￿harged,
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 re￿1vable 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