VHL
UK/lreland
von Hippel-Lindau Disease
THE CURE FOR CANCER IS IN OUR GENES
ANNUAL ACCOUNTS
ANNUAL CHARITY REPORT
INDEPENDENT EXAMINER'S REPORT
Year Ended 5 April 2024
VHL UK/lreland Charity is registered in England and Wales111603811 and Ireland1201010391

UK/lreland
von Hippel-Lindau Disease
THE CURE FOR CANCER IS SN OUR GENES
Receipts and Payments Account {UK} for the Year Ended 5 Aprll 2024
05 April 2023
05 Aprll 2024
Recelpts:
Donations Ilnc. Gift Aid)
Fundraising Activities
Trading Activities
7,909
31,163
6,207
630
201
8,110
38,000
Payments:
20,086 Grants and Donations
787
Patient Support
194
Subscriptions
Website and Postage
Fundraising Charges
821
391
94
489
105
445
1,900
21,514
13,404 Net ReceSpts/-Payments
36,100
48,321 Opening Balance
13,404 Net Receipts/-Payments
34,917
36,100
34,917 Closing Balance
71,017
Represented By:
Co-operative Bank
Paypal
70,017
1,000
71,017
VHL UK/lreland Chaf Ity is registered in England and Wales111603811 and Ireland1201010391

VHL
UK/lreland
von Hippel-Lindau Disease
THE CLIRE FOR CANCER IS IN OUR GENES
Chair's Annual Report 2023-24
The charity has recovered well from the effects of COVD.19 this year and our donations and fundraising total was
a magnificent £37,370. Events included,.
A Charity 8all, in conjunction with Cancer-52, which was incredibly well supported and raised in excess
of £6,000 for each of the iwo charities- our most successful ball yet.,
Events or8anised by patients and their famllles, includlng a Golf Day, sponsored walks, and a sponsored
abseil from Wakefield Cathedral I
VHL Awareness Month in May was very successful this year, raising awareness and funds for the charity
with quizzes, cake sales, fashion sales and ad-hoc donations.
There are currently three projects In progress whlch are being funded by our Grant Awards
111 £60,000 VHL patient registry and surveillance project - Genetic Centre at Addenbrooke's,
Cambridge under the stewardshlp of Professor Eamonn Maher.
121 £60,000 VHL 8ene analysis of the 100,000 genome project data - Genetic Centre at
Addenbrooke's, Cambrid8e under the stewardship of Professor Eamonn Maher.
131 £20,000 Saturation Genome Edltlng to Deflne Genotype/Phenotype Relationshlps In VHL
Disease - specific VHL research work of Professor William Drake at St Bartholomew's Hospital.
A further £35,000 grant award is currently ring-fenced for a research project at the Crick Instltute whlch
we are expecting to release in 2024-25.
The charity contlnued to work wlth MSD (Merck) and the Natlonal Institute for Health and Care Excellence INICEI
In respect of the approval of N HS funding for the new drug belzutifan Iweliregl. The MHRA approval for thls drug
Includes its use for RCC Clear-cell kidney cancer, hemangioblastomas of the central nervous system and
pancreatSc neuro-endocrine tumours. The charlty is re8lStered as a stakeholder wlth NICE and continues to be
involved in the approval process as a patient expert.
The charlty was a150 Involved with the 5cott15h Medlcines Consortlum in It5 appraisal of belzutlfan Iwellregl and
we were delighted when NHS funding was opproved for Scotland in October 2023. Scotland was the first country
in Europe to provide fundin8 for NHS patients and th is was a huge rnilestone for the VHL community. It is
understood that Wales and Northern Ireland usually follow En8land's lead. Ireland's patients wi15 be included in
the EU process.
Graharn Lovltt
Chalr
VHL UK/lreland Charity is registered in England and Wales111603811 and Ireland1201010391

Report to the Trustees of the
VHL UKllreland Charity
Accounts for the Year Ended 5 April 2024
Respective responsibilities of trustees and examiner
'I'hc chdrily's tru51¢¢5 ar¢ r¢sponsiblL Ii)r th¢ pr¢paratic)n (if ihe a¢¢uuni.4. ThL Lharily's Iru%tL'L.% Lnii%idLr Ihiil kin audit
is not rL'4uifLd IL)r this yLar undLf SLCtion 144 ul. th¢ Lharitiis ALt 2u I I (the C'harities Acil and thal indLpLiid¢nl
Lxaininatiiiii is ne¢d¢d.
It is my TespI)nsibiliiy io..
¢xuminL ihe aLc()unt.% uiid¢T %¥Ctinn 145 01. the c'horiliLS Act:
to l¢)IILiW ihc pri)LL.durL% Idid dL)wii in thL yeneral Dire¢tiiins given by ihl Churitv L()mmi.%.%iL)n undLr
SLLlii)n 14515111)) i)I' IhL L'hiirili¥% A¥1: and
io stut¥ wh¥thLI purtiLular niaiiLTS liave ¢()me l() my allLntion.
Basis of independent examlner's report
My LxuminutiLin w&% ¥arriLd L)ul iii acu)Tdun¢L with IhL' ¥LnL'rul l)irL'Ltii)n% giw¥ii hy ihL L'I)IlTity L'i)Inmi%%icin. An
¥NIIiI)iI)tLliiii) inLliidLY a TLVi¥W (Il. IhL IILLI)untinbi r¥¢L)rd% kLpi by il)¢ Lhmrily dnd u L()nipuri%i)ii Ill. IhL IILLi¥uiII¥
prL%Liil¥d willi il)(i%¢ rLLI)rd%. li ul%i) ii)¢lud4% Liiii¥idLruliLTri) cil- uiiu4uoI ilim% i)r di8cli)surLS in th¥ UCLI)Iini4. iiiid
iikinbi L•xplllnuiii)n% Ir(Im ihL' Iru%l¥Ls L()llLLniiiiy ¢lliy %ii¥h InallLrs. I'hi pr(IlLdiirL4 LindLriiikLli d(1 iiÉ)t pri)vidi ull
th¥ Lvid¥nLL Iliui wiiuld hL" fL'qiiir¥d in iiudil. and Li)n%LqULnily n() Iipiniiin is yiivln a4 11) wheihLr th¢ ULLI)unis
prLsinl a'iru¥ luir vi6w' l￿d il)4 r¢p()rt 1.4 liinitLd io ihusl muiiLrs SLI c?ut in il)L %IuiLIIILlit b¥l()Iv.
Independent examlner's statement
In LibnnLcli(Trn wilh niy cxllminlliion. no mall¢r h&s c()me lo my att¢n¢ion.'
I I I whicli ¥iv¢4 ML r¢asi)nJblL causv to biliLv¢ Ihui. in uny mu¢¢rial rLspLcI, thv r¥quirL'mLnt4'.
l() kL¢'p ilLL()Iinling Teciird4 in uc¢(>rdanc¢ with ¥LctiTrn 110 ol. IhL C'huriiie4 Act.. und
til pr¥pJfL ULLL)Lll)t4 wliiLli aLii)rd willi IIIL aL4C)uiiliiig rLLiird* uiid ii)iiiplv %% ith thL u¢¥()unt1118
rLquifLmints cil. (h¥ C huriliLS ALI havL n()¢ be¢n mLt; ()T
{211() whiLh.
bc rLuchLd.
y i)piniiin, uttLniiiii1 4hi)uld hL. druwn in Lirdir l() LnablL' a prL)p¥r undLf41andinB l)I'the acu)unl4 11)
Paul l)avid (Iriftjilis l.'L'A
l)ule'.
('hurtLrLd ALLiiun(an14
47 (iri)v¥ %trLLt
RLtlI)rd
Ni)tiin¥hdin4hire
l)N22 61.A
VHL UKllreland Charity is registered in England and Wales111603811 and Ireland1201010391