Annual Report 2025
Registered Charity Number 326679
Medical Advisory Panel ......................................................................................................................... 1 Chair’s Report ....................................................................................................................................... 4 Fundraising Report ..............................................................................................................................10 Report of the Trustees for the year ended 31 August 2025 ................................................................13 Staff and Trustees ...............................................................................................................................15 Report on Financial Statement 2024/25 ..............................................................................................16 Statement of Financial Activities 2024/25 ............................................................................................17 Statement of Financial Activities 2023/24 ............................................................................................18 Balance Sheet (31 August 2025) .........................................................................................................19 Notes to the Accounts .........................................................................................................................20 Independent Examiner’s Report ..........................................................................................................22
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Robert J Moots
Clive B Archer
Chair of Advisory Panel
Professor of Rheumatology/Consultant Rheumatologist
BSc (Hons), MB BS (Hons),
PhD, FRCP
Where qualified: Imperial College, London 1985
University Hospital Aintree,
Cons Dermatologist & Hon Clinical Snr Lecturer BSc (Hons), MB BS, MRCP
(UK), MD (Lond), PhD, MRCS (Engl), FRCP (Lond), FRCP (Edin), FRCP (Glasg), PG Cert, PG Diploma & MSc in
Where qualified: Guy’s Hospital Medical School, University of London io. a . 1978
University of Liverpool
Special interests: Clinical and basic science, Behçet’s
Trust and honorary senior clinical lecturer at King’s College London (KCL).
Adnan Al-Araji
Special interests: Clinical interests in inflammatory skin diseases, benign and malignant skin tumours, immunobullous diseases; research interests in immunopharmacology, cell regulatory mechanisms and medical
Paul Brogan
Consultant Neurologist
MB ChB, FRCP, FRCP
(Glasg.)
Where qualified: Baghdad, Iraq
1977
Royal Stoke University Hospital,
Stoke-on-Trent
Special interests: sclerosis and other
Member of:
London; past-Convenor, Neuro Behçet Study Group/
Faculty of Pop Health Sciences Qualifications/Post Nominals: BSc, MBBS, MRCP, Dip
GUM, Dip HIV, MJCSM Where qualified: Manchester Medical School Year of initial qualification: 1993 Currently practising at: Great Ormond St Hospital,
London
Special interests:
sclerosis and other inflammatory diseases of the central
Special interests: young
Sclerosis Centre of Excellence.
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Andrew de Burgh-Thomas
Consultant in Genitourinary Medicine BSc, MBBS, MRCP, Dip
GUM, Dip HIV
Where qualified: University of London 1994
Currently practising at: Gloucester Royal Hospital, Cheltenham General Hospital and Bristol Southmead Hospital
Desmond Kidd
Consultant Neurologist
MD BCh BAO MD FRCP
Where qualified: Ireland
1986
at Royal Free Hospital London Special interests: Neurological
Member of:
FSRH, ESSM
Special interests: HIV and genital dermatology
Philip Ian Murray
Farida Fortune CBE
Director London Behçet’s Centre, Barts Health and Queen Mary University of London
Qualifications/Post Nominals: FRCP, FRCS, FDS, RCS, PhD Where qualified: University College London Year of initial qualification: Dentistry 1975; Medicine
Job title: Professor of Ophthalmology, University of Birmingham PhD, FRCP, FRCS, Qualifilifi ca titions/Post Nominals:inal FRCOphth
Where qualified: St George’s Hospital Medical School, University of London
1978 ;
1980
Barts Health, Royal London site Queen Mary University of London Special interests: Immunology and Oral Medicine
at Birmingham and Midland Eye Centre but continues with research and teaching. Special interests: All types of uveitis including Behcet’s
Scleritis. Clinical Research : Quality of Life in Laboratory Research: The eye has evolved many
Dorian O Haskard
Job title: Professor of Cardiovascular Medicine and Rheumatology, Imperial College
Qualifications/Post Nominals: DM FRCP FMedSci Where qualified : University of London 1977
at Imperial College London/Hammersmith Hospital Special interests: Vascular inflammation
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Catherine Nelson-Piercy
Professor Obstetric Physician Job feat / post Nominal MBBSMA, FRCP, FRCOG Qualifications/ Post Nominals: Where qualified: CambridgeUniversity and St Bartholomew’s Hospital
ear off initiainitial qua lificatiMmeation : 1986 Currently practising at: Guy’s and St Thomas’ Hospitals
Special interests: Medical problems in pregnancy, . ., .
Graham Wallace
Associate Professor Senior Lecturer, Qualifications/Post Nominals: BSc Immunology, PhD
Where qualified: University of London
Ageing, University of Birmingham Special interests: Ocular immunology, Behçet’s disease,
thromboembolism, cardiac and renal disease.
Job title: Professor of Oral and Dermatological Medicine KCL/Honorary Consultant Dermatologist Where qualified: University College Hospital, London
1987
Guy's and St Thomas' NHS
and St Mary’s, Paddington, London
Member of:
Special interests: Oral medicine, immunobullous disease, autoimmune disorders
Research
immunobullous diseases and lichen planus
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Overview
Governance
Governance of the Society remains mature and comprehensive in accordance with Charity Commission
has remained stable. Alan Lane, Hon. Treasurer has once again shown exemplary governance of our accounts
with long-term goals.
Annual Conference
Commissioners of the Highly Specialised Services who fund the three Centres of Excellence. On top of that John
O
community and wider membership.
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Behçet’s Friends and Family Day
Our eighth year of hos�ng our Behçet’s Friends and Family Day, witnessed yet another great occasion, this �me hosted at Gra�am Water Centre, located between Peterborough and Bedford. This year it was most pleasing to witness a full a�endance with only a couple of people needing to pull-out at the last minute. As the event is funded by the Society’s hard-earned money, it is important that this trend con�nues. Gemma Darlow is thanked for the considerable amount of detailed work that is expended to ensure an enjoyable and safe day is had by all.
Newsle�er
Our Newsle�ers remain fundamental to suppor�ng our members. Clare Griffith, Editor, adeptly cra�s their compila�on and is once more thanked for the high quality of standard produced. Her summaries of conference are par�cularly comprehensive. All contributors are thanked for their posi�ve ar�cles, which Judi Sco� kindly collates. A core product of the Society, including significant input from the BPC, we con�nue to promote the use of our electronic version which saves the Society money, but the printed version will remain where demand exists.
Medical Factsheets
Our authorita�ve Medical Fact Sheets are reviewed and amended every couple of years and are important points of reference to both pa�ents and clinicians. A significant source of informa�on par�cularly for pa�ents who are ‘new to Behçet's’ they are referenced by all four Na�ons’ NHS websites.
Medical Advisory Panel
Succession planning remains a goal and the panel is an important facility when specific pa�ent query arises. It is with regret that we learned of the death of Dr Colin Barnes (1936-2025) recently who was a leading global figure in promo�ng research and be�er care for pa�ents with Behçet’s between 1988 and 1997 in addi�on to his own clinical du�es. He was a past Chair of the panel.
Fundraising and Membership
We have again witnessed the generosity of individuals to con�nue to give of their �me and effort to raise essen�al funds for the Society - £5k in Fundraising ac�vi�es and dona�ons and other income of £6.7k. We have s�ll to progress our Fundraising Strategy, and this will be a priority for 2025/26. Members with appropriate skill sets are encouraged to assist in this endeavour. We must establish underpinning predictable income genera�on as de rigueur, as notwithstanding the considerable endeavours of individuals to raise money for the Society, we currently do not cover our costs. Following a membership review as part of our CRM implementa�on, our membership stood at 1318 standard members and 37 junior members as of 31 August 2025.
Research and Suppor�ng Ini�a�ves
Underpinning Pillars
Encouraging research into Behçet's is vital, and it remains my wish to improve the logic of it all, to a strategic plan and collegiately addressed by clinicians and researchers world-wide. The first pillar of this in the UK is to establish a Pa�ent Registry. This has now been agreed and work begun in earnest to prepare the Business Case for submission to the Highly Specialised Services. This is being led by Dr Deva Situnayaka, with Megan Ru�er from the Sandwell and West Birmingham Hospitals Trust and Jon Higham from the Birmingham Community Healthcare NHS Founda�on Trust, together with the Liverpool and London Centres of Excellence (CoE). It will be based on the West Midlands Secure Data Environment (SDE); SDE data facili�es being established across the NHS as a ma�er of priority in accordance with the 10 Year Health Plan for England. It will start by capturing the data for pa�ents on the CoE books, but a complementary, linked registry is likely to be required to cater for other Behçet's pa�ents in England and especially those in the Devolved Na�ons. As a minimum, a Pa�ent Reported Outcome Measures System (PROMS) is envisaged so we rou�nely capture data on pa�ent experience within our health services; and in �me compare their treatment, by way of audit, against the joint Bri�sh Associa�on of Dermatologists and Bri�sh Society for Rheumatology living guideline for managing people with Behçet’s 2024.
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The second pillar is conduc�ng a Naturally History Study tracking Behçet's pa�ents in the UK. This will be facilitated by the aforemen�oned, to establish our par�cular phenotype (observable characteris�cs) of the condi�on within the UK. Thirdly, a Priority Se�ng Partnership with the James Lind Alliance (to set the 10 most important research ques�ons that are mutually agreed by clinicians, researchers and most importantly including the pa�ent perspec�ve). Regarded as the ‘Gold Standard’ it a�racts ‘budding’ researchers with an eye on career progression and thus into the bargain will increase awareness of Behçet's within the wider research community.
Finally, we need to get into the genomic medicine arena; where the field of genomic medicine operates, encompassing educa�on, clinical prac�ce, research, and the infrastructure to integrate genomic informa�on into healthcare. The NHS Genomic Medicine Service (GMS), with which the chair is involved, is importantly now undergoing a re-procurement exercise to deliver genomic tes�ng and personalized care across the NHS for the next 10-years (8+2 in the jargon!). A key goal of the GMS is establishing the ability to sequence and analyse en�re human genomes at scale and incorpora�ng genomic insights into rou�ne clinical care, such as for diagnosing rare diseases or guiding cancer therapies, and really get into the preventa�ve medicine space. As noted last year, my a�endance at the Interna�onal Conference for Behçet's Disease, ICBD 2024 reinforced my view as to how important this issue is; par�cularly my discussion in the margins with Dan Kastner, M.D., Ph.D. NIH Dis�nguished Inves�gator from the USA, who has maintained a vigorous clinical research program that studies pa�ents with both known and undiagnosed disorders of inflamma�on.
Gradually, our clinician and scien�fic colleagues are gaining insights into or DNA – of which the genome only makes up 2%. It is a highly complex area and requires a systemic, collegiate approach to make meaningful progress. The HLA region, par�cularly, hides much and the focus needs to go much wider than the o� quoted HLAB*51 ‘associa�on’. Located on the short arm of chromosome 6, it is the most polymorphic (exists or behaves in mul�ple dis�nct forms) region of the human genome and encodes proteins responsible for presen�ng an�gens to the immune system. This crucial immune region contains over 200 genes, including Class I and Class II HLA genes (like HLA-A, HLA-B, HLA-C, HLA-DR, HLA-DQ, and HLA-DP) which are highly variable and play a vital role in dis�nguishing self from non-self by binding and presen�ng pep�des to T-cells. Due to its high variability and strong associa�on with various diseases especially autoimmune diseases understanding the HLA region is cri�cal for medicine.
BAD/BSR living guideline
This important joint ini�a�ve promulgated in September 2024, has witnessed its successful ini�al year of implementa�on and the first annual review recently completed, for promulga�on shortly This important ini�a�ve adds visibility to members of the Bri�sh Associa�on of Dermatologists (BAD) and Bri�sh Society for Rheumatology (BSR), ensuring more awareness of Behcet’s within the UK. We are most grateful to all those who kindly gave of their own �me, unpaid, to ‘pull this together’ and par�cularly to Firouz Mohd Mustapa and Alina Constan�n - on behalf of the Bri�sh Associa�on of Dermatologists’ Clinical Standards Unit who manage the ongoing administra�on of the living guideline. Richard West and Laura Forest are thanked once again for their essen�al input into this area, represen�ng the pa�ent view. We now aim to develop a process of engaging with the wider-membership to help co-produce further this ongoing publica�on. In �me it should be used as ‘the standard’ to audit against as a check on how pa�ents are actually being treated across respec�ve Health Services. This is something, for example, LUPUS UK successfully carried against their BSR guideline some years ago, and a valuable tool to help achieve equity of treatment.
Other Research
As noted last year, Professor Moots secured significant funding from Novar�s for a major trial on the biologic Secukinumab; a biologic that is extensively used, and highly effec�ve, in several inflammatory condi�ons such as psoriasis. It inhibits interleukin 17 and has a be�er side-effect profile than infliximab. Behçet’s UK contributed £35k to assist with the recrui�ng of pa�ents, �me for which needed to be extended and thus adding to costs.
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Secukinumab; a biologic that is extensively used, and highly effec�ve, in several inflammatory condi�ons such as psoriasis. It inhibits interleukin 17 and has a be�er side-effect profile than infliximab. Behçet’s UK contributed £35k to assist with the recrui�ng of pa�ents, �me for which needed to be extended and thus adding to costs.
Professor Graham Wallace con�nues to conduct much important research into Microbiome and other areas, some of which we help fund when requested. Professor Fortune con�nues to support her PhD students with important research papers as does Professor Moots.
Communica�ons Strategy
I con�nue to represent the Society on Gene�c Alliance UK’s England Rare Disease Ac�on Plan Pa�ent Advisory Group, with Na�onal Voices Heads of Policy Group, the Neurological Alliance, the Prescrip�ons Charges Coali�on, Public Policy Projects and with Beacon (formerly Findacure), alongside several other fora.
On the genomics front, as Alliance Network Chair of the Central and South Genomic Medicine Service Alliance (GMSA) – basically the Pa�ent and Public Voice (PPV) or Pa�ent and Public Involvement (PPI) representa�ve – I remain alert to iden�fying opportuni�es where the Behçet's community may benefit from future ini�a�ves.
Social Media
Deborah Cardinal once again maintains a keen eye to spot opportuni�es for promo�ng Behçet's UK as followers con�nue to increase. Facebook now has 2,224 followers of which 75% are from the UK. Instagram has 1,678 followers of which 52% are from the UK. HealthUnlocked now has 5,553 ‘All Time Members’ with consistent ac�ve engagement of 712 posts and replies over the year. On TikTok we have 314 followers, while we have only shared the Living with Behçet’s anima�on that one video has secured 19.5k views. We are registered on Linked In with 182 followers although we do not currently post on this site and this op�on con�nues to be reviewed. In sum, our online presence con�nues to increase our visibility across all age groups.
Support Groups
Member Support Groups remain ac�ve, and Sarah McAllister has successfully encouraged increased a�endance on the England group. Rachael Humphreys’ Wales group meets monthly online on Saturdays and held a F2F summer brunch. Fionnuala Mc Kinley’s Northern Ireland group meets online and in-person, including in the Republic of Ireland. Yvonne Morris has been in touch with exis�ng members and tends to keep in touch on a 1-2-1 basis. Catherine O’Hara con�nues to offer support to members in Scotland. As men�oned last year new ini�a�ves from members in this area are welcomed. We are looking to start a ‘Spouses Group’ which Fionnuala Mc Kinley has suggested we establish. Please get in touch with Gemma or Deborah if you have other ideas to promote member engagement.
HealthUnlocked, which is linked from our Behçet’s UK website, is a space where those with Behçet's (or those caring for individuals with Behçet's, or indeed parents of children with Behçet's) share their experiences of healthcare, free from s�gma or judgement, talk to people living with Behçet's, and gain support from each other and pa�ent advocacy organisa�ons. There are more than 1.5M members, 315 public communi�es, 250 condi�on areas and 300 pa�ent organisa�ons represented within HealthUnlocked. I con�nue to monitor one or two other sites, for example the discussion forum for LUPUS UK, the Na�onal Migraine Centre and Vasculi�s UK.
Poli�cal Lobbying
We con�nue to encourage members to get involved with their local poli�cians, as and when appropriate although best done in a coordinated manner par�cularly when requested by Behçet's UK. Gene�c Alliance UK and Na�onal Voices lead in this area with whom the Society keeps in rou�ne contact.
For the record, and repeated from last year, the groups which we support are: The [England] Cross Party Group on Rare, Gene�c and Undiagnosed Condi�ons; All Party Group on Skin; the All Party Group on Rare Condi�ons,
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Assembly, with the assistance of the Northern Ireland Rare Disease Partnership (NIRDP). NIRDP also work closely with: the Northern Ireland Department of Health; the Health and Social Care Board; Public Health
Helpline
chair and Fionnuala McKinley, who is thanked for her important support. Gemma Darlow and Deborah Cardinal
Humphreys in Wales and Fionnuala Mc Kinley in Northern Ireland. Our efforts to establish a Behçet's Specialist Nurse post in Scotland, to help coordinate care in a diverse area, is progressing albeit it slower than hoped. We
carers.
Looking Forward
It has the support from Sarah Watson, NHS England, who oversees the Centre of Excellence, as the Highly Specialised Services Senior Commissioning Manager. As I have said previously “it is vital that members fully
of diseases. The aim is to recruit 5 million volunteers from the UK adult population to create a unique resource which will catalyse aetiological and translational research for both common and rare diseases by enabling: Access to data, Access to stored biosamples, Recontact studies/trials with participants invited based on e.g. selectively demographics and disease risks and
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become an Affiliate Member – at no cost to the Society (apart from your Chair’s �me….!)
I will again remind that, on the clinical side, we con�nue to benefit from the three specialist Na�onal mul�disciplinary Centres of Excellence led by three highly renowned Clinical Director’s; Professor Rob Moots, Professor Farida Fortune CBE and Dr Deva Situnayake. The centres having increased pa�ent numbers, with effec�vely no addi�onal resources compara�ve to 2013/14 when they were formed. This has resulted in less �mely response �mes and so forth but with ini�a�ves such as Pa�ent Ini�ated Follow-up (a Na�onal Health Service ini�a�ve) more efficiency is being achieved, given finite resources, to help Behçet's pa�ents as op�mally as possible. All staff opera�ng within the centres have many other roles within the NHS, which must be acknowledged and accepted.
The Behçet's Pa�ents Support staff, namely Jean Chris�ans, Rebecca Hyder and Jackie Pooler, managed by Denise Lavers, the newly appointed Opera�onal Lead, directly support them. John Mather is thanked for his considerable efforts to guide this vital aspect since the forma�on of the Centres; together with Jan Mather and her Board of Directors suppor�ng.
Conclusion
In summary, the Society con�nues to discharge its responsibili�es, strengthening its posi�on in many areas within the wider rare disease community, and is o� quoted as an exemplar given it’s rela�vely small size compara�vely to most other chari�es. The promulga�on of the BAD/BSR living guideline, as I stated last year, will over �me reap wide benefits – and we now need to facilitate a method of feedback from members in advance of the annual review process. Ins�ga�ng the Cons�tuent Management System is already making a difference to our administrator’s efficient use of valuable but limited �me. Strategically, it will safeguard succession planning, so that vital, hard-earned informa�on capture does not disappear when post-holders inevitably move on. It will improve our knowledge, understanding, connec�ons and feedback with our membership.
We are most grateful to all of you who help resource what we do to assist each other; whether financially or by way of other support. As stated last year, our financial posi�on remains rela�vely strong by comparison to the past but only thanks to significant bequests. So we must establish underpinning predictable income genera�on as de rigueur, as without those generous dona�ons, and notwithstanding the considerable endeavours of individuals to raise money for the Society we are not currently covering our costs. We con�nue to benefit from an astute Treasurer in this regard who is guiding fellow trustees in exemplary fashion, and ensuring we spend your money wisely.
Once more I thank everyone who con�nues to make Behçet's UK the compassionate and great ins�tu�on that it is, together with the clinicians who support our pa�ents. Gemma Darlow and Deborah Cardinal’s significant efforts underpin all the necessary administra�ve aspects that the Society needs, backed-up by your Trustees who con�nue to give of their valuable �me, voluntarily. I remain most grateful for their con�nued loyal support.
Tony Thornburn OBE Chair of Trustees
19 September 2025
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Behçet’s UK receives no external funding and therefore relies heavily on the revenue received from fundraising. The income from fundraising enables Behçet’s UK to provide funds for new and ongoing research into the
conferences, helps facilitate Behçet’s UK’s Annual Conference and AGM and provides part of the resources for the quarterly newsletter. It also enables the employment of our Administrator and Assistant Administrator whose efficiency and hard work ensure the smooth running of the Society.
never cease to amaze us with the events they plan and the challenges they take on. For the year from
financial year.
behcetsuk.org/get-involved to find out ways you can help and how we can support your fundraiser.
happy to help.
Neil Williams
14 September 2025
shopping, online sales
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cycle tf
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Magnificent Marathoners
We have always been lucky to have supporters keen to take on a running challenge but this year seemed to be the year of the
Emily conquered the RunFest Marathon raising over £400
Jemma’s Manchester half marathon raised over £800 to honour her aunt
David took on a Bea who has staggering 4 Behçet’s ran the marathons in 4 Yorkshire days in honour of Marathon to his sister and achieve a life goal raised in excess of as well as raise £3,000 over £800
Harry ran the London Marathon in honour of his brother and raised over £1000
Kerry held a bake sale for International Behçet’s | Awareness Day in be ‘ : $ } ° ash?is May with her colleagues and ~~raised £54~~
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Ruth held her annual ladies ball which she has been running for over 10 years. 100 ladies attended the evening in March 2025 which raised £2000
Facebook, Instagram & general fundraisers 16 members and supporters kindly set up a Facebook Fundraiser this year, most of which were to celebrate their birthday which allowed friends and family to make
FC Hyndurn held a memorial eae A ae Se Pee football fundraiser for Gary A ie sz ip \ 1. ) Moore with a match and =) tat ‘ « Pah ace! fa, sea ay) Geers E— ae —" evening event raising over £850 eS NO 7 ee ee aM cas eae SRE nt ple rove te ia “h" Me The Castleton boys hiked through ee. uaetitinuaiaigig i ae a. a l _ the Peak District raising £317
Le RS FE 5 a) , : ee. uaetitinuaiaigig Emily’s trek to Everest Cg ee wee Ne a peclenant ty Sai? RC Gia Was re Vie Neg ea ine Sces a[a] Base Camp for her 30[th] eSaad es Petane ae NS , i, ,: 2 Soon A MOMShy pale SaarE KaSeat NABere ee Oe exSa ee7 ee tees0% 4 birthday raised £300 RENx ‘ a es. 2 Ro AN wv a . ae % She ~ a a >, Re SA VaR 2 SS Stephen & Clare helped make Halloween even more spooktacular for their village ay for the local trick or treaters. They raised over £1000 in memory of their friend al Chris who had had always loved their . = # ~~annual Halloween displays.~~ -_ Page 12 of 22
The trustees present their report along with the financial statements of the charity for the year ended 31 August
report and comply with the charity's trust deed and applicable law.
-
followed subject to any departures disclosed and explained in the financial statements; and
-
prepare the financial statements on a 'going concern' basis unless it is inappropriate to presume that
Reserves
The trustees aim to maintain reserves at a level that lies approximately between the total income that the Society would expect in a six-month period and that in a full financial year.
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Risks and public benefits
regularly.
due regard to the guidance published by the Charity Commission.
Approved by the Trustees and signed on their behalf by
Tony Thornburn OBE Chair of Trustees
19 September 2025
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Trustees
Tony Thornburn OBE (Chair) Catherine O’Hara (Vice Chair)
Alan Lane (Hon. Treasurer) Mark Friston Rachael Humphreys Fionnuala McKinley Amanda Moseley Neil Williams
Staff
Gemma Darlow (Administrator) Deborah Cardinal (Assistant Administrator)
Banks
CAF Bank Limited 25 Kings Hill Avenue Kings Hill WEST MALLING ME19 4JQ
PO Box 883 LEEDS LS1 9TY Barclays Bank plc 1250 High Road, Whetstone London N20 0PB
Independent Examiner of Accounts
Clare Griffiths
Medical Advisory Panel
Prof Rob Moots Dr Adnan Al-Araji Dr Clive Archer Prof Paul Brogan Dr Andrew de Burgh-Thomas Prof Farida Fortune Prof Dorian Haskard Prof Phil Murray Dr Catherine Nelson-Piercy Dr Graham Wallace
UHY Ross Brooke Suite I, Windrush Court ABINGDON OX14 1SY
Behçet’s UK 124 City Road LONDON EC1V 2NX
Office Tel: 0345 130 7328 Helpline Tel: 0345 130 7329 Email: info@behcetsuk.org Web: behcetsuk.org
Registered Charity No: 326679
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In last year’s report
the Society had benefited from several bequests and had been able to set aside sums of £50k each, one towards the
research into Behçet’s. These had been noted in the accounts as ‘Project Funds’ so that it was clear that they were not available for other purposes.
project, but only small costs have been incurred to date.
This year
a wonderful former member ,
It is great news that we have entered 2025/26 with our largest ever reserves, which we hope to be able to use to help with one or more major research projects. However, I have to note that we are crucially dependent upon bequests
The General Fund
reserves of £62.8k.
Management’ (CRM) system, that will enable us to keep records of contacts with members and others more
The Research Fund had a total income of £178.0k, compared with £0.4k last year, when there were just a few small
in the year ahead.
The Projects Fund
membership to £30, the first increase since 2011. Members under 25 and those in receipt of means-tested UK state
should like to thank them for all their hard work during the past year.
Alan Lane
Hon. Treasurer 22 September 2025
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| General | Research | Research | Projects | Projects | Total | Total | Total | Total | ||
|---|---|---|---|---|---|---|---|---|---|---|
| Fund | Fund | Fund | 2025 | 2024 | ||||||
| £ | £ | £ | £ | £ | ||||||
| Income and endowments | ||||||||||
| Donations and fundraising | 18 744 | 160 | 0 | 18 904 | 18 904 | 25 609 | 25 609 | Note 5 | ||
| Bequests and legacies | 1 000 | 177 824 | 177 824 | 0 | 178 824 | 178 824 | 0 | |||
| Subscriptions | 9 617 | 0 | 0 | 9 617 | 9 617 | 9 141 | 9 141 | |||
| Gift Aid tax reclaimed | 3 085 | 8 | 0 | 3 093 | 3 093 | 3 140 | 3 140 | |||
| Grants received | 0 | 0 | 0 | 0 | 4 062 | 4 062 | Note 6 | |||
| Sales of goods | 1 252 | 0 | 0 | 1 252 | 1 252 | 775 | ||||
| Other | 3 684 | 0 | 0 | 3 684 | 3 684 | 4 663 | 4 663 | Note 7 | ||
| Total income and endowments | 37 382 | 177 992 | 177 992 | 0 | 215 374 | 215 374 | 47 390 | 47 390 | ||
| Expenditure on charitable activities | ||||||||||
| Trading costs | 300 | 0 | 0 | 300 | 129 | |||||
| Event costs | 3 432 | 0 | 0 | 3 432 | 3 432 | 1 925 | 1 925 | |||
| Fundraising costs | 415 | 0 | 0 | 415 | 779 | |||||
| Staff training | 63 | 0 | 63 | 0 | 0 | |||||
| Grants and bursaries | 1 303 | 0 | 1 000 | 1 000 | 2 303 | 2 303 | 1 145 | 1 145 | ||
| Research grants | 0 | 35 000 | 35 000 | 0 | 35 000 | 35 000 | 0 | |||
| Subscriptions to other organizations | 863 | 0 | 0 | 863 | 683 | |||||
| Helpline costs | 127 | 0 | 0 | 127 | 117 | |||||
| Grants to other charities | 25 000 | 0 | 0 | 25 000 | 25 000 | 0 | Note 8 | |||
| Salaries and wages | 35 187 | 0 | 0 | 35 187 | 35 187 | 31 623 | 31 623 | Note 9 | ||
| Social security and pensions | 707 | 0 | 0 | 707 | 650 | Note 9 | ||||
| Travel and subsistence | 3 289 | 0 | 0 | 3 289 | 3 289 | 3 863 | 3 863 | |||
| Insurance | 1 480 | 0 | 0 | 1 480 | 1 480 | 988 | ||||
| Telephone charges | 700 | 0 | 0 | 7 00 | 585 | |||||
| Printing, postage, stationery etc. | 659 | 0 | 0 | 659 | 1 246 | 1 246 | ||||
| Equipment purchases | 192 | 0 | 0 | 192 | 181 | |||||
| Newsletter | 10 697 | 0 | 0 | 10 697 | 10 697 | 10 375 | 10 375 | |||
| Web site and publicity | 670 | 1 020 | 1 020 | 0 | 1 690 | 1 690 | 600 | |||
| ICT hardware | 912 | 0 | 0 | 912 | 53 | |||||
| ICT software and management | 4 713 | 0 | 0 | 4 713 | 4 713 | 2 651 | 2 651 | |||
| Annual Conference and AGM | 7 894 | 0 | 0 | 7 894 | 7 894 | 9 265 | 9 265 | |||
| Governance costs | 1 286 | 0 | 0 | 1 286 | 1 286 | 1 646 | 1 646 | |||
| Other | 1451 | 0 | 0 | 1451 | 807 | |||||
| Total expenditure | 101 340 | 36 020 | 36 020 | 1 000 | 1 000 | 138 360 | 138 360 | 69 311 | 69 311 | |
| Net expenditure before gains on investments | -63 958 | 141 972 | 141 972 | -1 000 | -1 000 | 77 014 | 77 014 | -21 921 | -21 921 | |
| Net gains on investments | 2 449 | 1 515 | 1 515 | 0 | 3 964 | 3 964 | 3 806 | 3 806 | ||
| NET INCOME | --61 509 | 143 487 | 143 487 | -1 000 | -1 000 | 80 978 | 80 978 | -18 115 | -18 115 | |
| Transfers between funds | 50 000 | 0 | -50 000 | -50 000 | 0 | 0 | ||||
| Net movements in Funds after transfers | -11 509 | 143 487 | 143 487 | -51 000 | -51 000 | 80 978 | 80 978 | -118 115 | -118 115 | |
| RECONCILIATION OF FUNDS | ||||||||||
| Fund balance brought forward at 1 Sep 2024 | 74 309 | 17 217 | 17 217 | 100 000 | 100 000 | 191 526 | 191 526 | 209 641 | 209 641 | |
| Fund balance carried forward at 31 Aug 2025 | 62 800 | 160 704 | 160 704 | 49 000 | 49 000 | 272 504 | 272 504 | 191 526 | 191 526 |
Page 17 of 22
| General | General | Research | Research | Projects | Total | Total | Total | Total | ||
|---|---|---|---|---|---|---|---|---|---|---|
| Fund | Fund | Fund | 2024 | 2023 | ||||||
| £ | £ | £ | £ | £ | ||||||
| Income and endowments | ||||||||||
| Donations and fundraising | 25 219 | 25 219 | 390 | 0 | 25 609 | 25 609 | 32 962 | 32 962 | Note 5 | |
| Bequests and legacies | 0 | 0 | 0 | 0 | 57 081 | 57 081 | ||||
| Subscriptions | 9 141 | 9 141 | 0 | 0 | 9 141 | 9 141 | 10 051 | 10 051 | ||
| Gift Aid tax reclaimed | 3 120 | 3 120 | 20 | 0 | 3 140 | 3 140 | 5 027 | 5 027 | ||
| Grants received | 4 062 | 4 062 | 0 | 0 | 4 062 | 4 062 | 0 | Note 6 | ||
| Sales of goods | 775 | 0 | 0 | 775 | 784 | |||||
| Other | 4 663 | 4 663 | 0 | 0 | 4 663 | 4 663 | 5 085 | 5 085 | Note 7 | |
| Total income and endowments | 46 980 | 46 980 | 410 | 0 | 47 | 390 | 110 | 990 | ||
| Expenditure on charitable activities | ||||||||||
| Trading costs | 129 | 0 | 0 | 129 | 0 | |||||
| Event costs | 1 925 | 1 925 | 0 | 0 | 1 925 | 1 925 | 2 652 | 2 652 | ||
| Fundraising costs | 779 | 0 | 0 | 779 | 703 | |||||
| Staff training | 0 | 0 | 0 | 0 | 0 | |||||
| Grants and bursaries | 1 145 | 1 145 | 0 | 0 | 1 145 | 1 145 | 3 412 | 3 412 | ||
| Research grants | 0 | 0 | 0 | 0 | 0 | |||||
| Subscriptions to other organizations | 683 | 0 | 0 | 683 | 705 | |||||
| Helpline costs | 117 | 0 | 0 | 117 | 98 | |||||
| Salaries and wages | 31 623 | 31 623 | 0 | 0 | 31 623 | 31 623 | 29 055 | 29 055 | Note 9 | |
| Social security and pensions | 650 | 0 | 0 | 650 | 605 | Note 9 | ||||
| Travel and subsistence | 3 863 | 3 863 | 0 | 0 | 3 863 | 3 863 | 818 | |||
| Insurance | 988 | 0 | 0 | 988 | 913 | |||||
| Telephone charges | 585 | 0 | 0 | 585 | 515 | |||||
| Printing, postage, stationery etc. | 1 246 | 1 246 | 0 | 0 | 1 246 | 1 246 | 1 254 | 1 254 | ||
| Equipment purchases | 181 | 0 | 0 | 181 | 292 | |||||
| Newsletter | 10 375 | 10 375 | 0 | 0 | 10 375 | 10 375 | 9 672 | 9 672 | ||
| Web site and publicity | 600 | 0 | 0 | 600 | 412 | |||||
| ICT hardware | 53 | 0 | 0 | 53 | 971 | |||||
| ICT software and management | 2 651 | 2 651 | 0 | 0 | 2 651 | 2 651 | 1 102 | 1 102 | ||
| Annual Conference and AGM | 9 265 | 9 265 | 0 | 0 | 9 265 | 9 265 | 9 078 | 9 078 | ||
| Governance costs | 1 646 | 1 646 | 0 | 0 | 1 646 | 1 646 | 2 713 | 2 713 | ||
| Other | 807 | 0 | 0 | 807 | 1 267 | 1 267 | ||||
| Total expenditure | 69 311 | 69 311 | 0 | 0 | 69 311 | 69 311 | 66 237 | 66 237 | ||
| Net expenditure before gains on investments | -22 331 | -22 331 | 410 | 0 | -21 921 | -21 921 | 44 753 | 44 753 | ||
| Net gains on investments | 2 227 | 2 227 | 1 579 | 1 579 | 0 | 3 806 | 3 806 | 1 783 | 1 783 | |
| NET INCOME | --20 104 | 20 104 | 1 989 | 1 989 | 0 | -18 115 | 18 115 | 45 836 | 45 836 | |
| Transfers between funds | -50 000 | 50 000 | -50 000 | 50 000 | 100 000 | 0 | 0 | |||
| Net movements in Funds after transfers | -70 104 | 70 104 | -48 011 | 48 011 | 100 000 | -118 115 | 118 115 | 45 836 | 45 836 | |
| RECONCILIATION OF FUNDS | ||||||||||
| Fund balance brought forward at 1 Sep 2023 | 144 413 | 144 413 | 65 228 | 65 228 | 0 | 209 641 | 209 641 | 163 105 | 163 105 | |
| Fund balance carried forward at 31 Aug 2024 | 74 309 | 74 309 | 17 217 | 17 217 | 100 000 | 191 526 | 191 526 | 209 641 | 209 641 |
Page 18 of 22
| General | General | Research | Research | Projects | Total | Total | ||
|---|---|---|---|---|---|---|---|---|
| Balance Sheet as at 31 Aug 2025 | Fund | Fund | Fund | 2025 | 2024 | |||
| £ | £ | £ | £ | |||||
| Current Assets | ||||||||
| Stock in hand | 1 532 | 1 532 | 0 | 0 | 1 532 | 1 532 | Note 10 | |
| Debtors | 12 | 0 | 0 | 12 | 116 | Note 11 | ||
| Prepayments | 283 | 0 | 0 | 283 | 649 | Note 12 | ||
| Accrued income | 1 920 | 1 920 | 0 | 0 | 1 920 | 900 | Note 12 | |
| Recoverable Gift Aid | 362 | 419 | 0 | 781 | 851 | |||
| Deposit Accounts | -29 764 | -29 764 | 192 155 | 192 155 | 100 000 | 262 391 | 185 257 | |
| Current Accounts | 89 335 | 89 335 | -31 870 | -31 870 | -51 000 | 6 465 | 3 398 | |
| Petty Cash | 350 | 0 | 0 | 350 | 350 | Note 13 | ||
| Total current assets | 64 030 | 64 030 | 160 704 | 160 704 | 49 000 | 273 734 | 193 053 | |
| Current Liabilities | ||||||||
| Creditors | 510 | 0 | 0 | 510 | 348 | Note 14 | ||
| Deferred income | 0 | 0 | 0 | 0 | 430 | Note 15 | ||
| Accrued expenses | 720 | 0 | 0 | 720 | 749 | Note 16 | ||
| Total current liabilities | 1 230 | 1 230 | 0 | 0 | 1 230 | 1 527 | ||
| Total net assets | 62 800 | 62 800 | 160 704 | 160 704 | 49 000 | 272 504 | 191 526 | |
| TOTAL FUNDS | 62 800 | 62 800 | 160 704 | 160 704 | 49 000 | 272 504 | 191 526 |
The financial statements were approved by the trustees on 17 September 2025
Signed
Alan Lane Hon. Treasurer 22 September 2025
Page 19 of 22
Notes forming part of the financial statements for the year ended 31 Aug 2025
1. Basis of accounting
The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with FRS102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).
Behçet’s UK meets the definition of a public benefit entity under FRS 102. The financial statements have been prepared on a going concern basis. The trustees consider that there are no material uncertainties about the charity’s ability to continue as a going concern.
2. Income
All income is included in the financial statements without netting off expenditure. Donations and fundraising income are treated as General Fund unless they are specifically designated by the donor for the Research Fund.
3. Expenditure
Expenditure is recognised in the year to which it relates. Irrecoverable VAT is included in the relev ant heading.
4. Funds
The General Fund comprises funds that the trustees are free to use in accordance with the charitable objects.
The Research Fund was opened in 1995 and is specifically intended to provide for financial grants to be given to research projects in the UK concerned with the study of Behçet’s Disease.
The Projects Fund was opened in 2024 and is intended to hold funds that have been earmarked by Trustees for major projects, but where no contractual obligations have yet been undertaken .
Analysis of net assets between funds
| Unrestricted | Restricted | Project | Total | |
|---|---|---|---|---|
| Funds | Funds | Funds | ||
| £ | £ | £ | £ | |
| Net current assets | 62 800 | 160 704 | 49 000 | 272 504 |
| Total | 62 800 | 160 704 | 49 000 | 272 504 |
5. Donations
A number of members made small donations to the Research Fund, totalling £0.2k, in addition to their subscriptions this year.
6. Grants received
No grants were received this year from outside bodies.
7. Other income
These items mainly relate to Gift Aid and to administrative support given to Behçet's Patients Centres, the charitable company set up to support patients attending the three Centres of Excellence with funding from NHS England.
8. Grants to other charities
The Trustees made one grant this year of £25k to support the work of our sister charity Behçet’s Patients Centres, which employs a part-time support co-ordinator at each of the three Behçet’s Centres of Excellence at NHS hospitals in London, Birmingham and Liverpool, as well as a part-time Operations Lead.
Page 20 of 22
9. Salary costs Year ending 31 August
Year ending 31 August 2025 2024 £ £ Wages and salaries 35 187 31 623 National Insurance contributions 0 0 (after deduction of rebate) Employer's pension contributions 707 650 35 894 32 273
The average number of staff employed during the year was 2 persons ( 2024, 2 persons ). There are no employees earning above £60 000 ( 2024 none ).
None of the trustees, nor any persons connected with them, has received any remuneration during the year. One trustee received expenses for travel and subsistence costs this year totalling £1806 ( 2024: £2777 ).
10. Stock
Stock consists of purchased items intended for resale and is stated at the lower of cost and net realisable value.
11. Debtors
Donations received via PayPal that had yet to be transferred to the Society’s bank account on 31 August.
12. Prepayments
Parts of subscriptions paid in 2024/25 that relate to 2025/26 and payment in advance for Conference costs.
13. Petty Cash
Expense floats held by Administrator and Assistant Administrator.
14. Creditors
General Fund: Sum owed to HMRC in respect of August 2025 salaries.
15. Deferred Income
Advance subscriptions for 2024/25 received before 1 September 2024 (none received in 2024/25 for 2025/26).
16. Accrued expenses
Provision for fees for independent examination of accounts (plus staff expenses relating to 2023/24 paid in 2024/25)
Page 21 of 22
INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES OF BEHÇET’S UK
2025 which are set out on pages 17 to 21.
Independent examiner's statement
-
the accounts do not accord with those records; or
-
the accounts do not comply with the applicable requirements concerning the form and content of
reached.
Caroline Webster FCA
UHY Ross Brooke
Suite I Windrush Court Abingdon OX14 1SY
Date:[15/10/2025]
Page 22 of 22