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' ld 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