KLEEFSTRA
SYNDROME
UK
Trustees, Annual Report Letter
Kleelstra Syndrome UK
Charity Number.. 1208059
Reporting Period: 1st January 2025- 31st December 202512. year accounts)
Trustees. Annual Report for the Year Ended 31.12.2025
Charfty 14ame: Kleetstra Syndrome UK
Charity Registrntlon Number:1208059
Reporting Perlod: 1st January 2025- 31st December 2025
l. Objective5 and Acifvltles
Kleefstra Syndrome UK was established to support familie5 and individua15 affected by Kleefstra
syndrome - a rare genetic condition with complex needs. The tharity aims to..
Provide informatlon, advice and emotional support to families and carers
Raise awareness among professionals and the public
• Facilltate connections between familie5 through events and online platforms
All charitable activities are desiBned to further our aim of ensurin8 that no family faces the Kleefstra
Syndrome journey alone.
2. Achlevements and Perfomiance
During this second year as a registered charity* our key achievements include:
Providing ongoing peer support to famllles via online communities and one-to-one
connections
Planning for our 2026 national family conference to be held in July 2026.
Fundraisin8 and applying for 8rants for upcoming nat5onal family conference to be held in
July 2026
Key partner in the international Kleetstra syndrome meetings.
Organising local family meet-ups and accessible outings
Creating online resources for famllies and professionals
Strengthening our partner5hip5 Wlth researchers and clinlclans

3. Flnanclal Review
The chafity's income for the year was under £16,(KIO, derived frorn individual donations, grants and
small fundraising activities. Expenditure was in line with our charitable objetknves, Including support
activities, event planning, and communications includlng expenditure relating to upcoming natlonal
family conference in 2026.
No remuneration was paid to trustees, but some trustees claimed reasonable expenses in line with
our financial procedures.
The charity's finance5 were managed prudently, and we maintsin sufficient reserves to meet
upcomin8 planned activities.
4. Strurture, Governance and Manaiement
Kleef5trd Syndrome UK is a registe￿d charitable trust governed by a Board of Trustees. Trustees are
volunteers and meet regularly to oversee strate￿, activfaes. and financial matters.
The charTty was formally registered with the Charity Commission on 30 Aprll 21J24. havlng previously
operated a5 an unregistered voluntary group.
5. Public Benefft Statement
In exercising their duties, the trustees have had due regard to the Charity Commission's guidance on
public benefit. The charity's work supports individuals and families affected by Kleetstra Syndrome
across the UK and contributes to public awareness and inclusion for people with rare condition.

KLEEFSTRA
SYNDROME
UK
STATEMENT OF FINANCIAL AcnvmES
INCLUDING INCOME AND EXPENDITURE ACCOUNT
FOR THE YEAR ENDING 31st December 2025 {perlod from 1st January 2025- 31st December 20251
Bala￿e at Nat West Account 01.01.2025
10434.68
Balance at Paypal 01.01.2025
Available reserves as at 01.01.2025
11.423.98
INCOME
Restrirted Inc(M*e:
Grants
io.000.00
Unrestrictsd:
Subscriptions/Donations
2,528.31
15.338.96
26.762.94
Lèss Expenditure
Restrkted Expendlture:
0.00
Unrestrlrted Expendtture:
UnreFees IPPI
23.11
Zoom INWI
155.88
Markel Insurance INWI
134.40
Conference 2026
928.0)
Website Maintenance
138.24
Apparel
16.20
Just Giving
70.00
Totsl expenditure paid out
2,011.58
24,751.36

Balance sheet a5 at 31 December 2025
UAre$tri¢tcd
R¢•tri¢t¢d
Total (£)
Fwids (£)
(£)
C*sh •t b8•k ald Its hand
Monits held •t Yi &tWest
1{751J6
lo,￿)0.
24,751J6
Monie5 hdd •t P*yPal
o•
'rot•l casb held
1£751J6
24,75136
Reserves Position
UAr¢strl¢t¢d {£) Rutricted Fu]Mls (£)
Tot*1 (£)
Restrlctsd hnds
10.000.
ile51¥￿ted r¢#rv¢s'
s(1J￿00
0.0
sooo.00
UThrtthl¢t¢d frtt reseTrwes
9.7SIJ6
0.00
9,751J6
Total fuAd¥ I reseryes
14,751J6
i1.￿0.00
24,751.J6
*Desi8nated Reserves are set aside for future Conference