The Neurofibromatosis
Association
Report of the Board of Trustees
Year ended 31 October 2025
Charity Reglstratlon Number 1078790
Scottlsh Charlty Reglstratlon Number SC045051
Company Reglstration Number 03798407

Tha NourofibromatO818 Assoclallon
Report and Financial Statements
Year Ended 31 October 2025
Charity Name:
Charty Regi%tralhM NLffttsr.
10787
Scoltish Charity Ragistrntion N￿knr. SC045051
Company Registration MJMW.
3798407
Charty INoMng N*ne.
Ner¥• Tth)YAXS UK
Registered office and
operational addres¥.'
SW20 OLA
TekphcTh:
E-m811 address..
W8b8lle addr8$8'.
020 8439 1234
knfo@nmtumour8.0ry.uk
Norv• Turn¢)ur¥ UK
Nerve Tumours UK k• th wo￿n9 nam8 olthe d￿rIty. T*alM its legal nam8'The NeurofibromatoBIs
Association..
Board of Tnk*t•
Tho eUff•nt Board of Truthi l•..
Richard Gcrf)dè ICh•tr)
Mlchael Fry
Profe850r Rosalie Femer
Jon•lh4n Bru¢è IVKe Chair)
Rohan ChanmwJam
Proleswr Me•na Up•thyaya
Matthew Jones
8•nlor Man•g•m•nt P•r•onn•l
The Trustees delegate day-ttrday management of the dwity to..
Kaien Cockbum, Charity DIT￿r
Patron•
Gillian AndeT%
Sinw)n Callow
Thomas Ycyjng
Prof. D.Gareth Ev
Emity (￿n
Gwia Baum
IndopgndontAudtttXS
B#nkws
Nat*Jnal V4Èslminstw Bank P
S Mathet Flace
1 Park Ro&J
Hampton W¢k
Kingston. U[￿. ThaTh
Surrey
lff14AS
gjffey
I￿l1vx

The Nourofibromatosh Amoclallon
Roport and Financial Statements
Yoar Endod 31 Octobor 2025
Board of Trust￿ Rwrt for tho Yoar End•d 31 October 2025
The Trustees ofThe Neurofibromatosis Asscaation. tr•Jing as Ne￿e Tumours UK {NTUK), are p￿ased lo present
Iheir annual rgport and financ￿1 statements the year ended 31 Ociober 2025.
The financial statements comply the Chatities Ad 2011, the Companies Act 2006. Trustee Inveslment
(ScotlBndl Act 2005, the ch8riti.es Actt￿nts (sco￿8￿1) Regulations 200618$ amended). the lknorandum and
Article8 ofA890ciation, and the char￿e$ St*em￿t of R8uMnmended Prathe fchorib•s SORP") (applicable to
¢harib"•s preparin9 their accounts in ￿￿[dance w7th the FirbanCI￿ Reporting Standard app￿Cable in the UK and
Rewblbc of Ireland.. FRS 1021 effective from 1 Januwy 2019.
ObJoctlvM and Actlvltl••
Nerve Tumour8 UK'S w8ion 8•e8 a firture in *thich the needs of every<m *ith NF ￿ met and the charty Is ¢entral
to maklng thal hapyn.
To allow the chanty to deliver this of hel￿ng to improve the live5 of those affecteil by NF, the group medical
name for Neurofibromatosis Type 1 INF11. NF2rfela￿SCFr￿8nnOmato3is INF21 and Schwannomatosis ISWNI.
and In bolng contral to maklng thi8 happ•n, in o)Ilaboratlon wilh Hlghly Sp¢¢i•ll￿d Commissionlng
Services, forn￿rty the Natsonal Conwniss¢onwig Group INCG) fvr￿ed geNice. other a$soci8ted medKal professional
and educattonal esta￿1$hments around the UK. and Also in collabor8don wlth wlder inlemats'onal partner8.
N•rv• Tum¢)ur• UK'• nts•k•n 1$ to Improv• lh• livm of•¥•ry￿* affXt￿ by NF through support ￿rV*￿. •dvo¢
and promoting uthstanding aThl know￿ of the condrtion.
Centr41 to our mhglon. h our ambMon to be the UK9 aulhorftauve on NF and our detennIr￿tfj0n to urve,
support and celebrate ts INe8 ￿ people impacted ty the and *ider 8uppDrt netAffjrk.
The chanty conunuu lo de16vw Its flve key 8wvk¢i to nxmbw3, 8upporterJ, and benefldarfe8. 11
•ndeavour8 to..
Infomi
Vle provide accurate. felevan( and up to date inf0miat1￿ that exF4ain$ the corKlthon8 of
NF1. NF2 and SWN. the implutio￿. challerges arnj Opp￿untheJ, in language
We provide wathal and emotioMI advice to hdp people find the belt 8eM¢eJ and
support avaiLable. We enab￿ to make cholces al)out htrw approach and Ilve
wlth NF.
Adv¢x•t•
Wè alm tr> *￿eSse kntrwledge. ar￿ underglarKlng of NF. and *lll campalgn for
change in •reas we beF*ve will imrKoN* the INes of those affected by NF.
Conn•ct
We a pNotal robe in trirwjiry t￿]ether groy of people interested In NF to maximise
SUPF*yI and avail￿￿ to them.
Fund
We make funds availabk for small woiects lo bodRs and patth groups vknere V+* ￿110¥*
il wll make a difference w) temis of avrfweness. uThJerstandin9 & qualty of lrte.
The charity wc*ks with the foll¢xing gr￿p$ to xhieve rts mission..
Patients and carers
Families WTth NF
The medi￿[ wnmunty
The NF Specialist Nefv+th of Nurses and Ad¥ws
The research communty Iparbujlwly The Nerye TuMoU￿ UK med￿al knisory Boarf)
Leadln9 UK Uni¥eNties
TuM¢trpS
UK

The N•urofibromatosls Assoclalion
Report and Financlal Statements
Y￿r Ended 31 Octobgr 2025
NTUK S￿nS￿ed PHD resear¢r
SupporteT8
Volunteers
Other¢horth•s and unknella ¢X9ani￿tlon•
Overvlew. A¢hlevement• and PerfornMnc•
S•rvk•
We fund a unique and vital S¢fvi¢e, ¥*hKh Is not provld•d by any other oryanwtion. Our services are parucularfy
Important for peo* dlagnosed wth NF. thek lamllles •xl cwern. Many people T*ith NF arn vulnerable and often
l$olaled.
A la￿lAg 1•go￿ Ll the Coyid Pandem￿ 18 the NF cornm￿￿8 ongoirwJ fear of aft•￿ting h￿p￿81 appointments and
large S￿le events, as people are ffK*re susceptibbè lo the Minm du8 to the associated complicats"on8 of NF. Thi8
Impa￿3 on both the that they receNe. and ItK• d)arity'¥ Mmmunlty fuTrJral8*y capabilit￿.
There 18 Still a signthcanl backkg of ap￿Intments for gerths and n•urokw dintu. Thi8 was inib.ally caused by
reduced NHS 8taffing in 2020 and ￿jbIequént year¥. as many had lJ••n re*loyed to critical and Covld seThic89.
but wa¥ made far ￿￿r8e by thg continulng NHS 8tthk¢8 ovor th• t18t cou￿e 01 ye4r8. and thelgngth of tlme It
eurrentty tak•* to fill NHS Va￿n￿O¥. The CW ￿ extremty conc6m•d about tho ongoing potèntial impact on
mental health both for our benefknarle8 &)d our stsff. due to *rrkload as our Serv￿•5 conbnue lo face increased
demand.
This increa8ed demand Is due lo both the economK dimate and ts reSu￿ng absence or dfftU￿ in obtaSnlng
prfmary and 88condary care ser4kes. Somts 8eMces ar• SYII virtualty or ty td•phon• ¢on$uMatlon vthl¢
C8U8• Smm8ns• problem8 for people vAth NF, vkno elther do not have the fadlth8 lo loon virtual appointmen18, or
u? lo QOgn￿¥? is8ws wll lack the capadty to txganim and •ngag¢.
In response, the chanty has continued lo providti And gr￿ lo eMLwe thgt we can r•a¢h and Jupport our
benef￿la￿s, kn any way pos8ltAe. Due to this owling Siiuation in the wder care sector. the charrty took the
deci￿on to expand the Nats'onal NF Helplne semee from Iv*t• to thrrt d•y$ por wo8k from the end of2022, and now
Iso operate¥ a triage bookiThJ system ￿ the interyenln9 days. We COnb"n￿ io monitor demand to en8ure the
8erviGe meets the needs of the community, and adapt a8 fvnds pernlt
The charlty conflnu￿ to c¢n¢entrai• ￿ Its ￿traI t)¥¢ •¢r¥lc•8. hwe 4180 cMllnuod lo #trengthon and
develop our core support Slrudurns lo •n$Ln that we mgintain best poMibl• 8UPPOrt and advise 8eNi¢eg for
onyone affectsd by NF. We are col￿tantty in rWiab'on8 With NHS tntsts artyjnd the UK dI￿U#$ing how wt can
roll out our support sorvte8 kn the most e¢cmc¥ni¢ arhy officlerrt manner po88ible.
Fundlrva
AS the charity not roc8ivè st*utory (* kKal aU￿rity f￿￿Ing. the bu￿ oflhe charity's co￿$ from
charrtable gNiry and monies raised from events. Fortunately most major events. eX￿p1 for RideLondon, have
retumed to the calendar, hov•Wtt the commw)ty'$ ongoing fear of mixing. means that communty small scalè
fundraising has als but disappeared. This has had a signrfKart adverse effect on inLMJme streams.
As ￿ fund a no￿￿)rk of Sp•o4isl NF Nur8•8 Advi80rn {Spo>4ist Ad¥isornl, polw requires u$ to maintain
8 minimum of 12 nKinth$ of ￿8•￿e8. The ¢h8rty ¢￿tinUeS to react quickty to the C(￿StraInts placed on it by the
current economiG dim*, and by the latest Large sethr pay aYrard$, and the increase in National Insurance
Contributions. This has minimised th• impact on the levd of reserves held over the last few fina￿lar y8ars, and at
this lime, wa we confident that ￿ arn th to co￿"nUe to mamtal) our reger¥eg polw.
Ouks

The Neurofibromatosls Assoclatlon
Report and Financial Statsments
Year Ended 31 October 2025
Plan8 for Fuiuro Su8tslnablllty
Post pandemk. tr* chanty VAS forced to Ter￿n$￿￿ our str*gic pLan. the Bowd implemented a strategy
group, vthich continues to look at howthe ¢harity ¢an and expand its serlw, in this very te￿Ing e￿n0M
¢limat•. when deM￿d for our 8er4w have alcryside the hLwe hike in delNerNig our
80Thice8.
Key Strat•glc Almi
The charity's kèy strategic aim$ Gontinue to ￿.
Increase awareness arKI under8tandlng of NF. part￿￿lIrtY amongst medical PTofesslonals.
Provide and ff*aning￿l suppc*t and guklance to th(w Ir4iNJ *ith NF and their wider Support
n8W.
Promote and support research inlo NF.
Our frKu$ ¢ontlnues to bo on l)OW V•* can Streamline. yet exp8￿1. wr seThi¢os", cfyordinat• our work with all
partners Induding re8e8rch lJo(lies'. ond xnprove th• educatlty) olthe medlcal professbn.
In a survey duriTrJ th• report￿la porK￿..
93% olrespondents wanled us to o)ntlnue lo rnlse awarnM&8 of NF wlh tho mod1¢alprofg￿I0￿.
Our almlg to ensure that people are #b￿ to 8cees8 accurat• and twnety othce and supwt as •ffo¢twety and
Offieièntly 88 po￿1￿, whother or not that i¥ from the Ch￿ty. The charity's staff and medical continue to
promota the new rnedlcal hub on our I￿*b$ll8. ea8y ￿¢0$$ to bcture•, guhjellnos ond other Telev8nt
lotsls to •du¢ats Vthidor •lli•d hoaithor• Wd•s•￿1•.
The charfty also Strives lo find ne•V W8y8 of *￿>￿ing. indudlng GlIn1￿, appointsnents and meetings. Although
onllne services are not wactKal for all (for example, patients ¥&ith cognlbve impalmient and knming i8suesI, y￿ can
$ee that improved onlint conntdivty and familiarity lèads to red￿ed ddNory costs and greater efficien￿. In the
fvture our inlenbon is that a balarK• Of(￿line and in per8M vill alkn¥ tho charty lo provth 8ervtt8 to
more Feople.
8pocla118t 8upport N•t*wk
The chanty wlll continue lo malntsln h s￿dalISt Supm Nthwxk of Nwses & A￿8(￿8 Ispgciallst Advisors) and
continue lo #eek lo identfy areas of thè country where engagè and 7hDrk with the NHS to makejoint
•PPointm•nts.
The charity Gurrenuy funds a nety•vrk of ten Speck4list Adviscff5 rn the UK supporting posts in NewGastb,
8lmingham121. Hymouth12). Liverp￿1. Scthmptrjn. Sheffield. Leed8. and Wales. and h88 an a880ck7tson wrth
Northern IrelarKI. Urrfofbjnatety. the po¥t in Scotsnd IB #thl vacart as despib ¢yJr be#t tffort8 to •ng4y wlth the
clinical communbty, there apF￿r9 to be a blanket ban on recruitrr*nt In the region and as an interim. we a
COn￿nuing to I￿rk ¢108ely wlth the Sco#lth OTre for Rarg Diaeases, th• National Hdpline wjrks cFosely
Clinical Genelics at the Queen Elizabeth Unlversty HosF4t81 ba￿ in Glasgow. Vle ￿$alle that the Brf8101 post.
after several years in the plannry. V4ill be up aThl rurffting in 2026.
Two SFecialist NF Nurses OK￿le the Nerve Tumours UK National He￿)line on a part time basis. which provide8
advice and connects pe￿Ie affected by NF wilh relevarrt wxtical l*, either in theK comrnunty. or in clini¢, across
three days of the worknng week Cffi intefim days. the head offKe staff operte a thage helFdine. booking in
apw)intments or r8feThing to rngi¢)nal Spgciatist NF NuTres.
We aim lo Introduce fve new posts during the r*xt fina￿la1 year in parts ofthe UK. Mthere there has never been
any Tegional support. However. this timescale totalty depends ￿ the effectrrferes5 of the intemol med)anism$ of
th• indivtdual NHS Iru8ts, can beeam• long and proeesses. Eath of ow current Posts supports
OU14

The Neurofibromatosls As$oclation
Report and Financial Statements
Year Ended 31 Octob8r 2025
tse￿en 180- 3.420 patsents per year via dir#c8. ￿sit$, sthyJ n￿til￿, *tirkplace meetings,
advisory s•Mc•s, telephone consultations.
The rcle of Specialist NUrse￿Ad¥￿S is drrt5e. have ha(1 excellent feedw from the families supported
by ourl•am and it 1$ ￿ain to see thal for th050 frami1￿. th• support re¢eive from Ihe Specialist Supwl
NetrL)rk Is p6￿thI in helwng them tr) cope wth NF.
In & recent •UP40y compU•d durfn9 th8 18portlng po￿0d..
70% olth8 NF communRy w8rted the (*aty to NKrease av8118bNly dsuAx*t by having moTr Sp8clallst
Nurses 8ndA0￿￿￿.
Funding, and expanding. th¢ Sped•W Supwt Nelwork *ll continue kn be the k•y rol& for Nffi Tumour8 U
Over 60% of patients vAth NF1 have d￿¢￿tha. and apyoximatety are registered ￿ disabled, as are
75% of those pats'ents dlagnos&J NF2. H(Mwer. mrene88 of NF arxoss all profession$ including the medical
prole831on,18 low. Our experfence Is that thls can ￿ lo s¢)me chlldren t*th NF $truggling at sthool.
Inappropriate, or nonvextBtth)t 8upwt
Norvè Tumour8 UK offern a $thool$' advl80ry iNFom, operated by our Speciali8t Support Nefv*vrk. ￿ere
engaged, the team do* with teachérs, SENCO'S. albed heathare Frfofe88iona18, and parents, 8UPPOrtlng
tailored leaming plans. and 8ugge8ting m8chanS$ms for fjnhanc4ng th• chlkl'$ eyriencè at 8d)ool. A8 a r08uIt of
th• pand•mlc, V•* have fourKI that VK w Illl operate INFL￿ effectfvdy, albert ￿rtUalty. and In the year8 8lnce we
have found that more ailied healihcarn wofe8sk)nals are *illM)g and abbg to i￿n the iNForm meetings rf they are
held virtualty.
Nerve Tumourn UK conlinut8 lo offer an exten3r4e range of lilw8lur• and Snfomwtlon, for lay people, whid) IJ al•0
d¢ly used by OIIW healthcare profo8swMth Ihg UK arKI fvr#)or •ll•ld. Our bafiets and pamphlo1• ar•
subject lo constant f￿•W and updats.
Wa contlnue to expand our INForm progrnnThry, I￿Ing dwnowd *41h NF to reach thelr go•￿, with a
8u¢¢e¥slul and rKelved ofthe'iNForn) Your Uthtr8Olf r
We contSnue to ralse awaref￿8 amongst the wlder mèdtil wthsslonab C￿M￿nNY, at every opportunty, be il our
Specialist A¢fvisor8 gNlng Idk8 to local wp8 or m41mbern of the Hoad OIFth S•n*)r M•n4emont T•8m 8tt*ndlng
nalion•l conferenc￿. Medics are invite(I to use Nerye Tumour8 UK Nalional Hdpline a8 required and to
•ubsrJbe lo IM oTrllno Meojcal Hub.
Charlty Reach
Th• N•rve Tumourl UK H&gd Offi¢è tèam corthue to *Y)rk excepti￿alty hwd. golng above and beyond In
response lo the fallout from the *t fthv years. arby tho Board aro again very gratefvl for their effc¥ts. Key
workstreams include the constant development of I￿r *tbsite. in Parti￿*[ the medtal seGtlon, the researth hub,
and thè collaborativè useful ￿￿n￿tiOnS soction. Wo rxeNed oxtremety poth feedback on, and after, the
launch of the medical sectlon. and have seen h(Mf this Mwoves ￿**J&AS erg4err*nt WTth ￿￿diCal
professionals, particulady GFYS.
Social media remains an important and grThiing aspect ofthe chanty's communicati.ons and marketing strategy, and
we continue to see healthy websrte traffK, despite an increasingty thalfenging digrtal landsGapg. Dedicating ongoing
tim8 and rasource to these area$ en$ura$ th* ve meet our communications 9081s of 8erving the communty,
supporting the community al￿ raTrsing awareness of Y￿h1n the c(xnmunty.
Facebook r8maln$ our ts"9g￿l SO¢bO1 r￿"0 channel strong eNJagemnL Throughout the financial year, our
updates re¢eived just under 4 million ￿e￿, vknite also saw more interath.on and engagement from our followe
with a 80% increase on the prewous year. Our totsl frA50v￿ng grew by 4.5% and now sits just short of 8, 500. Our
other primary KKi81 medFa channel is Instsgram. vthere visual storytelling tskes a greater To￿, giving us the
opportunty to share and $h¢)Kase the real-life stories of our benefickaries. Our following there exceeded
2,400 and throughout Ine year we reached jusi under 138,000 peo￿e.
Rv¥
UK

Tho Nourofibromatosis Assoclatlon
Roport and Flnanclal Statements
Yoar Ended 31 October 2025
We also host a private NF CcrfnmLsnty Group on Facebook, of Cbrix 1,800 m&ml)ers, there patients or thew carers
can talk, ask questions and share experien￿ in a safe space.
Through the year, our websrte received over 181,500 vivws from almost 52.500 users. ¥thlle the numb•r of
subscribers lo the monthty NeFVe Tumours UK ￿e￿Ie￿er8 gTVW to cyca 3.47S.
Dudng Wodd NF Awareness Vkek in May 2025, we Saw malor high p￿.rtts in our yeaty engogemenl totals.. thr￿gh
the respective NF1 and NF2 days," the ann¥Jal Shine A ￿ght campaign, ¥thich saw 178 strategic buildin9 and
landmark$ light up in blue in supw(' and ¢wr annual digttal media campalgn. Th1$ years campatgn grabbed publl
attenbon ￿th a cheeky and thoughlyovokn'ro queslion."Do Charty Ads Get On Your Nervesf, rai8ing awareness
of NF in muf(iple strategic l¢)¢ations by nnning across 25 major rail hubs, and reaehing a footlall of some 2.3 million
peo￿e. A tsmpaign running in paralw on FaceBook YouTube reached over 970.000 users wth 1,150.000
plus impre￿On3. and re8ulte(I In 531 Ilnk (**B M t1￿ ￿mPaIgn. Th8 aoh4ert8 have 8180 8een 49.000 plu8, P081
engagements.
We also Con￿nUe to Beek to devolop and •11￿9￿￿ our h￿1 partnernhlp¥ wlth organisallon8 Including The
Conlr• for App*aran￿ Re3earth. The Genetic Aliance, and Neurdogical AlliarKe. We have anoth•r medical
Inf￿ation day planned lor 2026, *thlch be both Iv￿$treaM8d, to [￿h as many of the
communty as po8sibLg.
The contlnued r￿lO￿t of LxJr• s•nrfc￿ thrwghotrt the perknd Is an ￿¢•lIent Yelledlon of the comblned efforts and
dedlGation of the Specialist Nets￿rk of NursealA(fvi80rn. our men*ern, supptytrs, head office $t•ff aTha the M•dlcal
Advisory 80ord. th• Tru$t••$ we ¥•ry grnt8ful fty the exc¥ts'on•ty h¥d *rrk. whKh has been put ￿t0 the
charfty.
There are no immediate finandal concem8 fcrf the cknrity. although the ￿rreftt economic dimat$ and upheav$l
remalns of concern. The Iru5tets maintain that NeThe Tumours UK is still CUrr￿tty on track to m•81 it$ long-temi
8tr8tsgl¢ and flnanclal targets.
Struthro, Govornanc• and Managem•nt
Nerve Tumourn UK is a Ch•rit8ble Cthnpany, limited ty guarantee, incorporated on 30 June 1999, and registered
a8 a chanty on 5th January 2000 (wovlousty 284653 reglstered 1982) wlth a mèmbership b88•. The company wa8
èstablishéd undor a Momor￿d￿m of Aswiabon, whth e5tabhshed the objects and p￿er$ ofth• Charitable
company arKI is governed under ts ArtKles of As%Kith. In the event of the CLwnpany bew %￿Und up membgr8
are fequlred by the adopted Conjlrtuhon trJ (x)ntrilxrte an amount not exceeding £1.
The dIrec1￿ ofth? conwany are ablo charity tnmteej the puryJo8e8 ofthamy Ivw, and under the company'8
Articles are known as members of the Board of Trustees. The Board of Trustee$ m•rfs at l•a8t four times a year
and is responsible for the strategic direction arKI ￿licY of the tharity app(xntwig auditors to ensure financial
compliance. Medical Inpul Is gfven via our Medical Advisory Board. a rePre￿￿tiVe olththich on the Board of
T{ust￿. Trustees are 3eleGted for ther of NF arnl the wofessw)rrd. that optimize the knOW￿dge
8nd ability of the 8oard.
A sub group ofthe ofTnJstees, the Fb￿n￿al Athrys(￿ Group, WKI Includlng the CIHrtty DlreGtoT, ha5 been
estsblished to ¢CfftKler and tr* fmaTh>al aThJ investrwrt ofts tharity.
Modical Background
The charty'$ me￿)erShiP is rrb* from faThNltes affected try NF. NF1 affects 1 in every 2.500 Fwple
wodthwde. which means that there are more than 25.0￿ in the UK.. NF2 is much rarw, 1 in 35.000 affected
woddwide. wrth 1,000 in the UK, and there are approxHnatety 500 people diagnosed wrth SM.
An affected [￿On of eithef sex h88 8 1 in 2150..501 chance of passkng the altered {abnom81l gene on to thelr
children. However. everyone has a risk of havry an affected ch￿d because 50% of all those affected by NF th•
first person in their f8mity lo be so affected.

Tho Neuroflbromatosl$ Assoclallon
Roport and Financial Statemonts
Yoar Endod 31 October 2025
NFI is a hugety variable e0ndrt￿. vA)ich has the potentsal to devekjp a large number of complications. Some
people wth NF1 having sknn invofvemenl but Wenlial complcations indude.. specffic leaming dffiuJltie8 and
behavloural problem8- which affects about 60% of all peopk with NF1', high bkjod Pressure {hypertension).'
curvature of the spine {8coliosisl' maltornation of the I￿g bones (tdcM the kr￿ and below the elbow)
{pseudarthrosk8}' large benign sk*) tumours IplexifNm neurofibroma81.' tumours on the netve8 of 8ight {optic
gliomal.. intemal, spinal and brain turr￿S- arn usually benbjn ho*•ver 10-15% of wopl8 VAII devglop a
malignant tumour related to their NF1. The mts5t swnrFtcant i55ue for people *ith NF1 is that the ￿cuThen¢e of
these Complications cannot be predicted even wthin familbes. Many people with NF1 also have low Se￿-eSteeM and
thi8 can cau8e problems forming frberMIBhbpB. whwth lèad8 to WO￿1￿)n.
NF2 ¢on3i8lenlly causes more probjems than NF1. it has an increased risk of devel¢)ping brain bJmours.
Although these lumours are benNJn. the position in vthich they grow cause maj¢x problem$. The most common
srte 1$ on the hearing and balance neryes cau$irvJ problems with deafness and coordination. The sense of isolation
from deafnè$$ onset in adutthood can be imrnense. Peiwe NF2 may 8150 d8vfjbp wnal ¢ord tumours. wtth
their ¢)wn 8ignffic8nl complicatk>ns.
NF18 an unpredktsble arKJ vWlab￿ ger* 0￿dI11)n th8t can allecl all pa￿ reg￿d￿$ o1gerKler, raco or age.
During their lrfeb'me, palEnts rnay see a wide range of I￿alth arKI care professionals. I￿th in eommunlty ar
hosptsl setting8. The Spwalist Ath'sor¥ act as a pomt of refwen¢e for familie8 helpng them nawgale through
routine planned event8 and at times olcrlslg. E88erthlty. their role 18 to help peop￿ to lèam lo Ilve wrth Ihetr
diagnosis of NF and to ewip them *ith the knoh4edge ofwhon. Tthtwe, to s••k holp. M nKessary.
As a mult￿$Y$toM condit￿, NF ha8 an Impact on many arnas ol peopl•'s I￿8$, nol lu81 he•lth. The Speck81181
Advisors take a lead lo￿ in liaison and arfvo¢•cy with htr8Ah. e¢kKation, al￿ social $ervlc•s to 8UPPOrt the quo11ty
and ¢ontinuty of care for famil￿ affocttd by NF. They seek to develop a sèNke that 18 professional, timely and
regponsive lo need. Thelr geth.ng may be ch'nical. vij￿r￿J families al hcffne or telephone ¢ont8Gt. The ouallty of the
Telallon8hip8 they 08tabll8h18 tyrt￿l to thetr effeclfven688 and may ¢￿ttnu8 over many yearn.
Flnanclal Revlew
Incom• G•n•ratlno Actfvlll••
Our ttead offtce leam ¢onlinue to devebp Innovaove vlriual fijndralslng kleas aTrJ 8Lwr¢e new income SI￿am$ at
every OPFQrtunity. Ouring the perio(1 Ihe charty had income resources of £555,411 and a total exwndrtura of
£546,010. r••uttlng In net re•oW￿ of£7,401.
This ha¥ re$ulted in lotsl furKls of £656.018 bdng camed forwwd. Of thbj figw8 £28,88118 r05tithd to proJe¢ts 86
8peclfled by the lemM and corwjlbons of certakn donal1¢￿¥.
InYo1b))•nt Polky
The charity's fvnds have been invested in a mixlure of one year f￿ed income bonds aThJ short-temi dep￿rtS this
ffinanctal year. The Financial Advisory & Investment Grwp, established in kle 2022. reportmg lo the Board of
Trustees. continue lo remewthis posluon and fvrther irNeslment OPP￿inthS. to ensure all income poten￿8115
maximi8ed, vlth nlnimum risk.
We give carefvl c￿$[deratiOrt as to how can make our reserves generate an income thtr charTty and have
considered a number of options arKI irrfL¥mal advi￿. At present. given the cwrwrt rate of return, the costs involved
In investing, and the inherent ri5K wa have ￿ntinU#d to d¢et to hold the reserves in a mIxbJ￿ of short and medium
temi deposits with a number of barths. Htr•mer, continue to M￿lIOr al other options available.
Ro•or¥H Pollcy and Golry Conc•m
Reserves are r￿ded to bridge the gap between the spending ond r￿l￿ng of Rico￿ and to cover unplann8d
emergenw expenditurè. The Trustees Consider a minimum of £500.000 is the ide81 level ol rèseryes and being
suffiLy8nt unreslitted resefves to fijnd Specialbst Siwyt Nth(Kk for a minwnum of fv*lve mnths due to the

The Nourofibromato6i8 Association
Report and Flnancial Statsments
Yoar Endod 31 October 2025
number of murtkyear contr8ctyal C￿M￿l￿￿', dWit￿$ administrati￿ and operaknry costs for at SLY
months.
The Trustees consider that adequate rex)ur¢e$ ¢onlinue to be aval￿ble to fund the xtivrbes of the charity for the
forg8998t4e futu￿. The Trugtees are of thè view that the thgrity 1$ 0 going ¢on¢em.
Koy Exp•ndliw• Ar•a•
The key areas of expenditur• ¢￿￿{nu• to b• th• opwalltyd ¢¢8ts ofth• Spodalljt Supwt Netrmwk of Nur8eB &
Advisors. Each year, ￿ aim lo raise sulfi¢ltnt fur￿ lo rnaintsin the lI￿￿e months. Teserves. If the chwty provides
further funding for th8 Spedallst Netrmxk. th18 tsxrth￿. the required ￿￿e1 of r88eryes. Is likety to Increa￿.
Publlc B•n•fft
All our charttable actlvlile8 I£￿# on Ihè1fr4es of tho8e affethl ty NF and are Ufthrtaken to furthw our
charitable purposes for public benefft. The Trustees have regard lo the Charity Commis8ion'8 guitlance on the need
for chariti￿ to dolrnr a public b8n•fft and have fAimplied thg dLty in secticm 17<21 of Charilies Act 2011.
R•crnltm•rt Appolntrn•nt & Indu¢llon of Bo•vd olTru•tw•
Under the requirements oftr* Memornndum •rKI olAMocl•b'on, the (*)evthtrd longeil stsnding members of
the Board of Tru8ts98 ¥hall reb're or put th9m¥8￿ frywwd f¢Y r•-eleCti￿ al the next Arinual General Mèèting. Th
maximum tim• 4 trustee can remaln kn FMt * t•n y•arn, that Ilme may ￿ •xtendod for a •hort by
the Board on an ￿reP￿.1)nal basks.
The 808rd ofTru8le08 seeks to recruit a mix of I￿￿ne$s, mo￿￿81 and patwl expertise, athough preferrèd,
there18 no requirement for a Board member to have any diffKt or indirect exwience of NF. All Tru8to8s, upon
•*lion, m••t wlth the C￿r to dIS¢u￿ and r•qIrnn￿l ofth• Td•.
8t•tsm•nt of Tru•l••• r•¥￿IbI￿1••
The Twstees, Wt￿ are also tr* directcrs of the NeurofitKomatsth Aeaodatth for the pury)08e of company law, are
responslble for prepadng ￿ Trustee8 RepL￿ and the fina￿al slatemenl8 in ac￿￿(larKe vAth FRS102 and the
charity SORP IFRS 1021. The Trustees must ncl apkYov• finan¢ial slat•m•nts unloss they arn Satisfied that they
give 4 tru• and far ￿eW of th• stal• of affairs of the ehuty at tho •nd ol th• fin#r*A*I y￿r and of tt8 iurplu• or
deficit for that wrtod. In doln9 $0. th• Trust￿8 aro rwcwblo for.
ielecling 8uit*bl• 4x¢ounting and th•n wly Ih•m
observing Iho m¢thcx1$ arm1 pri￿lpleS kn the Ch8f6lM SORP.
making judgements and estim8tes that are reasona￿e aTrJ prudent:
preparing the financial slatements on the g(M'ng ￿nCern basis unless il IB nol apprwate to a￿ume that the
ompany V*ill continue on that basis.. arx1
the maintenance integrtr of the ¢orptyalo arKI financial wiformat*M induded on the charity's website.
The Board of Tfustees is re8pon$blg for maintaiThn9 kYLW ac£ounbng records vhmch disclose WTih reasonable
accuracy at any lime that the fin8rKial Statem￿ wth the CompanM Act 2006. The Board of Trustees is
al80 responsible for safeguardkng the assds of the charitatAe cornpary he￿e for taking ￿$¢￿able 8t•ps for
the prevention and detection of fraud and other ryul*iti"es.
Mombgrn of thg Board of Tn*to0•
Member8 of the Board ofTwstee$, threctors kylhe purpose ofcompany knv. and Trustees for the purpose
of charty law, serve(1 dunng the year and up to the date 01th￿ rem are set Oth ¢)n page 1.

The Neurofibromatosis Association
Report and Financial Statements
Year Ended 31 October 2025
AudltorB
Davfjd H¢Jward was 8pwnted as audrtor uThJer secb.on 145 of the Charilies Act 2011 and seth'on 4411 Ilcl of the
Charities and Trustee Investment IS¢oland) A¢t 2005 and uThler the Companies Act 2006 and rep(Kt in accordance
vAth the Acts and relevant regulatiorts made LY havrfj effert thereunder.
In 80 far as the Tfustees are awdre. at the time of *Jpr(Ning our TnLqtees' annual rerwt
there 18 no relevant infomiathjn, ￿NIg needed by the aiMJitor in connection V•ith preparin9 thelr
repor( ofvthich th aLthor 18 unaware,. and
the Tnffjtees. having made enqukie8 of fvllTh Trustees and the thafity's auditors that they ¢)uglrt to havo
individualty takon, have •ach tsk•n all $tV8 Ih•t hW8he 1$ obliged tr) tske a$ a Trustee in order lo make
themselves aware of any relevant audrt Infom￿ and to e8tsblMh the aud6tor 18 aware of th8t
Inftymatfion.
Small CoM￿nY provl#lon•
ThL8 report has been prepared In tre specaal wo¥lsi)ns tr Sm￿1 companles under Part 15 of the
Companle8 Act 21￿.
Approved by the Board ofTrLMt889 on 10 F8bnwy 2028, and ¥gr*d on ts beh811 ty..
Rlch*rd Good•
Ghalr of tho BO1￿ of Tru•t•
& Comp•ny S•¢r•tsry
Jon•th•n BnK•
Vlc• Ch411

The Neurofibromatosis Association
Report and Flnanclal Statements
Year Ended 31 Octobèr 2025
We have a￿lited the finarKHI slaterwts (rf The Neun)f*mr￿ts AAsLxHlion for the year ended 3151 October 2025.
¥gt Qui over page¥ 14 to 25 roport, conyi8e the statement offinancial activths. the balance aheel 8nd the
related nrrtes. The finarhrial rewxbng frwn&4th that has been in their preparat￿ 15 appEicable law arKI the
Finawal ReportiNJ Stantjard ap*ble ￿ the UK Re￿￿ of Irel¥#l (FRS102) {effethe 1 knuary 20191-
(Chartties SORP (FRS 102).
Oplnlon ¢)n th• fln•ncW •t*t•m
In our oplnion thè finand81 stateménts".
91v• a true Ind fatr vlew of the stats crf the charltable compan￿8 affalr8 •* at 3111 Othlxr 2025, and ol tts
incoming resour¢ts and applieation of r¢souw. knr the year lI￿n endgd:
have been property wepared In ac¢ordar*ce Unrted kn"ngdom Generally Accepted Accounting Pracb'¢e,' and
h•v• bfj￿ pr•p•r•d in •¢¢tydoru vthh th• COMp•ni￿ Acl 2006 and Charitses and Trust•• Inv•8tm•nt
(Sco￿and} Act 2005 and regulakn 8 of the Chanlle8 Ar£￿nts (Scotlandl Regulatlon8 2006.
Ba8lB for oplnlon
We conducted ow audl in ac£othnLYJ vlth Int•mthl StsrwJwd8 on AudKlng IUK) {ISA8 (UlQl ar#J SP￿￿￿ble law. Our
responsibilities urM1ér thcth slandards are lurfler d•s¢n"￿ in the Auditc¢s re8p)Nbilrtth for the audit of the finoncigl
$t8ltmenls section of our rewt. are independerrt (rf the ch¥iiabl• cL¥npany in accordan¢e with the ethical
requirements that ar6 relévant lo our aud* of the financial statements in the UK indudNig tho FRC'S Elhl¢al Stsndard,
#rKI wè have fuffilkd ¢)ur other ethical rew8tbUth8 In vAth the￿ rnquiremwrt•. V¥* ￿11￿¥• Ihal th• aud
e￿Ience we have obtslno(I16 8ufflryent arKI •pprcylat• lo for our opknv)n.
Conclu•lon• rnl•tlNJ to golng cone•m
In audlting the flnanclal 8taterMnts, we Iwe con￿￿8￿ that thg TruBto••' of th• gokng concwn ba818 of
accountlng In the prepara1#￿ of the finarval Stat￿n￿ts is ¥)propnate.
tha( Ir￿1ViduallY or coli•¢tiv•ly, n¥y cast 8lgnlftant doLI)t on th& d￿n￿8 atxlty to C￿￿'nUe *• a going conc•m f¢r
Our respongibilthes and rnApcmknlHllos ol tho TnmtO￿ rejwx to ¢(*r4m aro dexr*Ad kn the relevant
Beclions ofthls rewt
The other Information (xjmprises the inftrm¥llon if￿￿￿&y kn the wnual re[￿. kK4uding the Tw8lees' w*p)r( othw than
the finan¢ial ¥tsterrEnts and ow a￿111￿8 report thereon. The Trustees are re¥>oroible for the other irftimalion
contained ￿￿thIn the annual reF¥Jt. Our Opini￿ on tr* 8tstetrthts not cover the other infomiatKJn and,
except to t￿ extant empw stated in our reprrt ￿ OJ nrA exp¥e66 any ftjm of aswra)co conclusion
thereon.
inconsistent wth the finaneial ststenvrts (* oblained in the course of Ihe audit, or crfheTh¥ise appears to
be matefialty misstated. Ifwe iderthfy such n*ia #icons￿1￿￿￿ ￿ apparent Materi￿ misststeffthts. ￿ are required
to detemiine whether this ￿yeS rise to o Mat￿31 misstalement in the fmanC1￿ Statem￿ thwnsefves. ￿. based on thè
reFrf( thatfacL
10

The Neurofibromatosis Association
Report and Financial Statemants
Year Ended 31 Octobor 2025
In our oplrdon. t)a*J on the w)rf( undertakert in the courne ofthe a￿111..
the 1nfrffi￿ given in the TnMtee8' Report forthe fin￿￿*1 year ftyvthith the financial Statements afe
prepared ￿ eonststent with the finanaal ststerrents.. and
the TN8tee8' Annual Report ha$ been ￿epared in &c4)rdm *iih applic**le *al requirements.
In tho Ilghl of our kn￿￿￿￿9* and urthrntsndkng of tho thwifabl• ¢xmpany and Its •nvlTonment obtslned In the
course ofthè audit. we have not Klfjntifiod m*erial m￿StateMents in tho Trustse#' NA￿Ual Rèport.
We have nothlng to report in respect of the follcwA'ng rnatt￿ wthere the Conwnies Aet 2006 ar￿ the Charitses
Ac￿unts (Scotlandl Regulal¢)n8 20C6 requlre us to reF￿ to you rf. in our OpinK￿."
•dequale and proper accounting records have not been kepl or rdwn8 adtyuat• for our audrt ha￿ not
re¢eivod from brar￿h•S not v18rted by ￿.
tho finan¢ial statements ￿ not kn agree11￿ thlth the re¢¢Kds rettm8',
certaln disclo$uMs d Trustws. r•munwation speow by law are not made,
we have not T8￿1ve￿ all the Informglkn and 8xpl8natlons we rewire for our audlt.
the Trustees *tre not entitted to prepare Ih? fina￿141 jlaterwts and the Trustees, report In acCOrdar￿ wlth
th• $mall compfjnKg•' reglme.
R••poMlblllll•• ofTn*t•••
As explained more fulty in the Trustees, res[￿fish.11￿s $tat8mont sèt ¢>Jt on page 2 to 9, the Twslee8l￿Q are a180
the direcbrs of the th9rrta1￿e company purposes of company 18wI are re8Fonslbl& for the preparallon ol the
flnanaal Statements arml for belro satisfied tr￿1 they gNe a INe arKI fw'r vlew, and for such Intemal control as the
Trustees detern￿ne 1$ ft￿¢￿ry to enabb the prepwats'on of financ￿1 8tatery￿nts that are free from mateilal
misslalemenl, vthethor due lo fraud or effor.
In preporfng the financial statem￿, the Tru8lee8 are re8poMlblo for 0J8e881rKJ the compAny's abllty to conunue a8
going concem. disclosing. as applKat)le. matters related to going concem and using the goiThJ ¢oncern basis of
accounlirwJ unless the Tru5t¢es eithw wrtend to IKiuidate ts cL¥npany ￿ to cease operations. or have no realisJc
alternattve to do so.
Audhorn, vMpon•*llltl•• lorth• •udlt olth• trknnclal •t4t•m
We have teen apwlwiled as audltor Lmder sethon 145 of the Charilies Art 2011 aThJ sectlon 44111{c) of the
Charttles and TN8tee Investrnent {Scodand) Ad 2fy)5 and under th& Companw 2006 and report wi a¢¢ofdanc•
with the Acts and relevant regulations mad8 or hawng gffg¢1th8mth.
Our objeclhes are to obtsin reasonable asSurar￿e about *l)elherthe ftnanclg18lat•7￿ts as a Ythole are free from
material misstatement. whethèr due to fraud Of •rror. and to issue an •uditorf$ rèport that in¢ludes our opinion.
Reasonable assurance is 8 high level of assurance. but is not 8 guarantee that an audrt condueted in accordance
vlth ISA8 {UK) vlll aw8 detect a matwfial m0$8tatement **en 6t exists
Misstatements can arise from fraud or error and are consmlered material rf. kndividual￿ or in Ihe aggregate, they
coubj reasonabty be expectsd to irffluence the de¢isiorn of ulers laken on the baw ofth¢se fin8ncsal
statements.
Irregularit*s. I￿udIng fraud, are inslartts of n£r￿comp￿ with I￿ regulations. We ¢Jesw procedures in line
wlth our respon&biiattes. (Mrtkned above. to dete(x n*rial n4ssiatements n re8p*i of ireguLgrities, indudlng frdud. The

Tho Nèurofibromatosis Association
Raport and Financial Statem•nts
Year Ended 31 October 2025
Our approach to idenbfying and ass8sswvJ ts risks matw*l mNtaIe￿ in resped of iwegulariii88. induding
fraud arKI nonrycomplia￿e with la￿ aThJ rejkn. as foltrK".
th8 •NJag•mwtt partner ensured that the engaggmert team collecll¥dy t￿￿ the approprlate compelenG•.
capabilities and thlls to identify C￿ re¢ognise rv)rpcompli¥Ke wtth applica)le kn¥s and regulallons.,
we identified the law4 and regulakn8 app&cable to the crynpany through dixussions wrth TNstee$ and
other management. ar￿ from (xw coftNn￿l knvArfedge and ewience of the d)arlty sector..
we focused on spedfic laws and regulations wthi¢h cons¢dered may have a di￿¢1 material effect on tho
finanaal statements or the operations of the company. I￿}LK11n9 such as the Chanties Act 2011, taxation
gi8lation. data protect￿. Iwllh and safety legislation..
we assessed th• oxt•nl of wilh the and Tegulalions Id￿ts￿•d abo￿ through m•klng
enquiries ol managamthrt and inwtirvj legal crnF¥)r¥j•n￿,. arKI
hJ•ntffi•d law8 and regulation8 communKated vAItrAn the audlt toAm regulorty and tho t••m rnm•lnod
alert lo in$tance8 of n¢NKO￿lar￿e thmughtyth the audiL
W• assessed the Susceptiblty ofthe c(ryany'8 finandal Statem￿ to m•tsrid misstatement, induding obtaining
an understsndlng of htyw fraud nlght cKcur, by:
maklng enqUIrf￿ of managen*rt a8 to Ihoy c4)n9￿ thwe w48 8u8ceplblllty lo fraud, thelr
knowAedge of actual, SUBF*ctsd and alleged fraLKI'
considering the intwn•l crythl• In to mtyte offrwA and nonvcomplknce ta￿ and
r•gulalion8', and
To addr•88 the ￿fjk of fraud Ihrough m4n4emant bws and ovorride of c4>ntrol8, W•..
p•rfomied •natyts'cal ￿0Ced￿reB to identity any urKwal or urnxpKt•d relauonthlp.,
tested loumal entrles to hlenty unu$u81 transa(ai)ns,'
alsesged wt*lher judgi)m4Mts and assum￿rn m#d• in d•iwmining th• wcounting ••tim•t•• s•1 out in
Not• 18 V**re Indi￿￿¥• of pclential bi•s', and
knveslgated the ratiMalo bthirby signiftant or tran8action8
In ro¥pon¥e to the ri•k of irr•gul)rities •rKI rw<¢)mpIk9r￿ *ith laws regul•b)ns, d•swJr￿￿ pro¢edur•8
Ich In¢lud¢d. bthw•r• not Ilmlt•d to..
agrfjeing financial ¥lalement di8¢k)8ures to ￿r￿k¥j doGvmwrtakn,'
readlng the n￿nuteS of rwelSrvJs oftho8e thorg¢d wlth 9￿•ManCe..
quirlng of Trustees 88 lo xluol pot¢nbo1 Iltsgatsw and 4olm8.'
There are Inherent IImita￿on8 kn our audit procedurn8 above. The more removed that and
rogulatr'on$ arg from finondol transa¢llon$, Ihe l•ss Nkety11 Is that we ?*￿Id become aware of nM4ompllan¢e.
Auditing standar(Is also limrt the audit pr￿8￿u￿$ requifed lo identify norFe￿￿p1￿nce with laws and regulation$ to
ewuiry of the directors and other management and the inspeclion of reguLqtory and legal correspondence. rf any.
Material misstatements thal arise due to fraud can be hanler to detett than th08e thal arise frcrfn error as they may
Involve delibeRts corKealment or coNusion.
A further de9(¥ptr￿ of our respomibililies for the of th& stat•m•nts is kKated on the Financial
Reporting Council's ¥￿bSite at [www.fr¢.org.uklaud*or5rew*>iliaosl. This desuwion for￿￿ part of our auditorfs
report.
other mattgrs which are rwuirgd to addre
In the prewous accounting period, the trustees of the charity toc* advantsge of atwjit exemption under Seclion 477
of the Companies Act 20C6. Therefore, the prior per￿￿ finanual statements were Mt sJJbject to aud6t.
12
TuMowPS

The Neurofibromatosis Association
Report and Financial Statements
Year Ended 31 October 2025
Uso of our fvport
This report is made solety lo the d￿ritable corryjany's members. as a body. H) ac￿nIance wlh Chapter 3 01 part 16 of
lh¢ Ctynpanies Ad 200e. and to the tharitable company's T￿￿tee￿, as a bijdy. accordance with Regulation 10 of
Ihe Chartbes Accounls IS¢oUan¢Jl Reg￿LationS 20C6. Our audit has been undert8ken so that we might State to
the charitable compaThy'$ members and Tfustees those malters VIE are required to state to Ihem in an auditOT'S report
and for no othei purpw. To the fuHest extent perrnitted by law. we do not accept or assume responsibilty to anyone
other than the ch8ritatAe cunparry and. Ihe ch8nt*de corrrf)wry'$ nxn*ers a$ a Wy and thg charitable cc¥npany'5
Trustee¥ a$ 8 boty. our aKlltwyK lor thi8 rewt. orkn the opkn1￿ we h8¥* Iofmed.
8lnod Dongol FCCA IS•nlor 8tatutory Audltor)
For and on behalf of Davkl Howard, Slalulory Audllor
1 Park Road
Hampton Wl¢k
Klngston Upon Tlwffl
surrey
r14A8
Date: ¥3..Fgbruary 2026
13

The Neurofibromatosis Assoclatlon
Report and Financial Ststements
Year Ended 31 October 2025
ststemont of Financial Activities {in¢ludlng Income & Expondlture Accounts)
for the Year ended 31 October 2025
Tot•1
Totsl
funds
2024
UDauoited
2025
202S
2025
Incomlng RMoUrC￿ from Gon￿￿ Funds
Donations & Legxies
Income from Charitable
Activities
Invo$lm•nt Incom•
118.353
472.658
402.954
52,123
26,902
1,730
53.653
28,902
71.183
13.314
Incomlng R•wJrc•• from Chwhabl•
Actlvlti
4A329
120.013
655.411
487,431
Oth•r Incomlng Rowurc
Total Incom•
4x329
120,013
$5SA11
487,431
Exp•ndltur•
Cost of rai￿n0 fund8
Expenditur• on d)Ofrtablo
8Ctlvilies
133.788
133,788
114,890
300.695
113,528
414,221
370,998
Tot•1 R••aurc•• Exp•nd•d
44413 113,$26
S48,010
486,887
Mot Incom• (Expndlturn)
7N01
R•conGlll•llon of fund•
Total funds brought forytsrd
Net r￿Vement in funds lor
year
826.491
22.128
848.618
847,073
6.556
7,401
Totsl fvnd• carrl•d lorvmnl
28,681
656,018
The 8tateThnt of fingna81 athl1￿ include8 all gainb k)B8e8 in the yew. Al incomirwj robtsur¢o8 snd r¢¥our¢•$
expended derive from conlinuing opwabons.
14
OU#5

The Neurofibromatosis Association
Roport and Financial Statements
Year Ended 31 October 2025
Balance shoot as at 31 Octobor 2025
2025
2024
Un8udrted
T￿gible fixed assets
io
1.320
2.284
Curr•nt a•e•ts
Debtors
Cash at bank al￿ in harKI
11
14.162
754,090
788.252
14.352
720.194
734.547
Creditors '. amounts f8lllng du•
wrihin one y•ar
12
113.554
88,214
Net current a88•ts
664,698
646,333
Not ••¥•ts
Ana￿￿• of r*t a••ets b•hw•n
funds
Unre8tricted fiJnd8
Restrtcted fur*d6
Total fund¥
627.337
28.681
626.491
22.126
13
The trustees ackniAthdge their reaponsbilities for cOmpl￿'n9 thith the rewiremenis ofth• Conyanw kl 2006 wlh
respect to accounting records and the preparth'on of accounts.
Th• flnandal StsteM￿lS ar• prnpw•d in aco)rtarKe with the Spec￿ prov08￿8 of the Compani•s Act 20C6 and
section 138 of Ihe Chants'es Act 2011. These accounts are prepargd in accordwi the Finoncial ROpo￿.n9
Standard applicable In the UK and RepublK of Ireland (FRS 1021 (effethe 1 January 2019) - (Charfttes SORP
IFRS 102)).
The note$ al pa9e$ 17 - 25 fcmi p*t of Ihese •xounts.
Approv•d by the eoard olTr￿te￿ on 10 Febru￿ 2028, and ￿gned
ts behaff by..
Rlchard
Chalr of The Board of TnMt•
& Company S•¢r•tsry
Vlc• Ch•lr
Company RegiStra￿n No. 03798407
Chartty Regi$tr¥tion No.
10787
Scothsh Charity Register No. SC045051
15

The Neurofibromatosis Assoclation
Report and Flnanclal Ststsments
Y•ar Endod 31 October 2025
Ststemwrt of for th• y•ar ond•d 31 Oct¢)bw 2025
2024
Unauditod
Cash flows from owrnllng
acVvltlè8
Ca¥h absorbed by (perai￿
7.634
Net ¢ash ouffiow from op•raUng •cll¥lll••
176,4781
Inv••tlng actfvitl•8
Purchase of tangljle fixed •*￿￿
Interest recelved
N•t Infiow
p.841)
(4,569)
28,261
8.745
N•t Id•Grn•••ylnGr•u• In ¢••h & c••h •qul¥al•nl•
33,895
187,7341
C4sh & cash •qur¥alents at baginnlng of Perlod
720194
787 928
Ca•h & ca•h •qulv•l•nts at •nd of P•rlod
18
T¥pAou%S

Th• Neurofibromatosis Association
Report and Flnanclal Statements
Year Ended 31 October 2025
Note8 to the Flnanclal Statements
Accounllng polkle8
The prin￿PaI a¢¢oUnts￿￿ pol￿￿ are summarlged beknw. The acco￿ting wlK¥es have been applied ￿)nSIStenty
throughout the year and tho we¢edwvJ y￿.
The flnanc￿l statements conwty V•tth the Charttles A& 2011. the Companies Act 2006. Trustee
Investm￿t IScotLandl Act 2005. the charities Aceounts (Scottand) Regulation$ 2006 la$ amended).
the Memorandum and Articles of Assooatlon. aryl the Charitie¥ Statement of Recommended
Practic• I'charltlss SORW} {8ppll¢•ble to ¢h8rille8 prtpariry th*r aceounta in a¢¢ord&nee WTth the
Flnancial Reporting Stsndarrl applbcabb& ￿ the UK and Rewulc of Irelan¢Y." FRS 1021 effectlve from
1 January 2019.
Tha Neurofftbroma￿ Aswgabon tr* dthillm ofa bonofft enyty urthr FRS 102.
The finar￿al￿tatQnXfits arn kyepared kn 8tertlNJ. the funcaky￿I currency of tho Charty.
Monetary amounts in these financial stknnents arn rounded to the nearnsl £.
The fin8nGbg1 ¥tsten￿ts h•v• twn syepgred WKlerthe IM•kniral ¢onv•ntion. Th• yknci￿l
•ccounllng
unl•￿￿¢1￿ funds •r• av8il•t4• for #t th• ofth• tru81•￿ frJrthèranc8 of
the general obAectsves of tho Charlty, and
R8stncted fimds are s￿'ected to reslnction8 on eX￿l￿re Inwed by the donor.
Incom•
l incoming re8ourtss are included In the slatement of financial activltles wthen the tharity is
ontsued to the income. and ts arr￿￿Trt Can b• quantified with r•asonabl• aceyr•¢y. Th¢ folbwlng
•pecffjc policies a￿ applied to pawtwlar of inm..
Income frrrfn don*'ons arKI leg4ge¥ 13 rvKNeil by w ofwants. donaUonJ, fvndralsing
aThJ gfftj and Is induded in ftrll In the Stat•nxnt of Financ181 Acts"V￿"ej when recelvable.
Grants. wthere entthm¢nt 1$ not Condth￿al M tho dolivery of a Speclfic perfomsnce by the
chgrity. arg rocognised vthen the tharity becomes uncorvjiiionally entitl￿ to the grant,
The value of 8or¥iGes prowded by ¥o￿n￿er3 ha5 irKluded in tP*se acctsjnts,
Income tr￿n charitable aclivilies are xcounted for when eamed. and
Income resources from grants. Ithere Telated to Ferf0m￿nCe and d￿l￿rOble8, are
accounted for th•nty e¥n$ the r&ht to consid•raVon by ttj pwlomianc•.
d) Exwdltur•
Expenditure Is recognlsed on an acxrual ba813 as a Kabllty Is Ir￿lTr8d. Expendmure Includes any
VAT whtch cannot bg fvty Tecoverwd. aTrJ 1$ reprytgd a$ part of the expendibjre lo vthich il relates..
Costs of rai$in9 funds comprise the costs associated 7Mth attracting voluntary incomè.
These indude those costs ass(￿￿ Mryih meeting the ¢onslitutional and ststulory
requirements of ts charity aThJ strategic managemenl of Ihe chartty. Govemance costs
comprise the costs assoGiated wth the goveman¢e of the charrty, indtsding audit fees, and
a￿ shown separatety thin the Statement of Financial Act￿rt￿8
Expenditu￿ on ¢haritable aelivities compri￿ th0￿ costs incuffed by the chanty in the
delNery of ris ac11vili￿ and Services fur its benefiu"ar*s. It indudes both ￿$ts that can b¢
alk)cated direw 10 acbvths and those costs of an indirect nature ne￿3Sary to
17

The NourofibromatO8is Assoclallon
Report and Financial Statsments
Year Endod 31 October 2025
All costs are allctated bet*Ren eX￿￿rt￿e categorie8 ofthe Ststemènt of FinaThio1
ACtiV￿"e9 on a bosis designed to refie¢t the use ofthe res￿ree.
Depre(aabM." Assets aTe ￿Itten off ow ts4r* years on 8travJht hne bask8 of dwecth'on.
Flxed Ag9•ts
T8￿ble ￿ed assets are Inltlally measwed at cost and Wuenty measwed at cost or valuatk)n. of
dekxeciation aThJ any impwmient losses.
Indfvlrknl fixed a$￿ts cojlryi £250 or MO￿ cawtalisad ot
Depreryation.. the value ofexh asset Is Mitten off over trKI years, M a ¥traW.Nne balis.
Golng Goncem
At the ￿m• of approvlng th• ffi￿n¢￿ statem￿. the Tnmtees have a r•asM•bl• exp￿t8￿0n that the
Charty has adequate resour￿8 to continue in Op￿at￿￿al existe￿ for the fornseeable fijture. Thus. the
Trusto•s conlinue to adopt thé goirvJ CA)ncom ba￿ of ￿&￿n11n9 in preparw th8 finaroal ststoments.
g) D•btorn
Tra¢Je and ottwr deL*m are rwiised at ••It1•￿ due.
h) Crndltorn provl•bon•
Cfedrtors and provSslon8 we recogni8¢d the ¢h*rty has a prnMnt obliga￿n re8uIUng from a pa81
èvent that will probabty r•sutt in Ihe tran8f•r of frJrKls to a third party and the amount due to Settle th•
obllgaiaon can be meosured or estim*ed reh'abty. Creditors and rrfovlsitins are nom81ty re¢ogni$ed at th•ir
8etU•mont am(yJnL
Infomi•tlon and l•g•l •tstu• of th• chMIty
Nerve Tumours UK Is a Charltable Company, lknited by guarantee, incorporgted on 30 June 1999, and
rtgistsred a8 8 charity on 6th Janu*y 2000 284853 regijtered 1982) with a membership ba8•.
Th• ¢ompony w4$ •$tobli8h•d Ur￿*r ¥ M•m¢Jrandum of As8ooathJn. which estabkn'8had tho objects and
powers of the charitable corrpany and Is goveirnd under its Articbej af Assockqbon. In the event of the
company befing y￿und up rrthbers arn requirnd ty the adomed Const￿ to conlribute an amount not
•xce8thrKJ £1.
J)
Pen8lon8
The penston costs charged In the fin8ne01 ststomwts rwe8ent the conlrfbLrtlon payat4e by the chA
during the year. Contribut￿$ ore made to define(I ¢￿triL￿rtI￿ schemes m the UK.
18

The Neuroflbromatosls Assoclath)n
Report and Flnancial Statements
Yaar Endod 31 October 2025
Income
Totsl
fun(ts
2025
Total
funds
2024
2025
202S
Unaudiled
al Donatlon• & Ltyacl••
DonaUon8 arKI glts
Events
Glft Ald
Grants
Logacitis
Sub8CriPtion#
62.918
119,445
31.796
12.850
121.391
5,904
62,918
119.445
31.7
131,203
121.391
5.904
54,653
127,552
33,140
131,350
SO,231
8,028
118,353
3S4.303
118.353
472.658
402,954
bl Incom• from Chwltsbl• Acts¥ltl••
Fundraising
52,123
1.730
53,853
71,163
$2,123
1.730
53,863
71,163
¢llrwMtm•nt In¢om•
Inter•81
28,902
28.902
13,314
19

The Nourofibromatosls Assoclation
Report and Flnanelal Statements
Y￿r Ended 31 (ktober 2025
3. Grants
Totsl
funds
2024
nd8
2025
2025
2025
Unaudited
Thè GTrce Tru81
The Peacock Tru¥t
The G8rtleld Weston Foundatw
The Three Oaks Trust
The Nomian FomSty Ch***ble Tnmt
Th• B$ron Davewt Cl￿rity
The Schon Charitable Trust
The Sir Jame8 Rollb Charilabi•
Trust
The Arolhlck Trust
The Limbr￿k Hall Foundation
Tho James Tudor Foundation
The February Foundalknn
A•xlon Pham￿¢0￿￿(•1s UK
st Jude's Tru81
The Slr John & Lady Anx￿ Charllable Tnmt
The Claire Mlln• Trust
The Roger & Jt8n Jelcoate Trust
Commlmity Lottery Fund
Thè Cuthbert Hom Trust
Th& Joseph Hopkln8 Chafliatjle Foundallon
Th• Hadrian Tru8t
The PF Edwards Charitsbh Tnmt
The John Avins TnMI
The Roger & Dou91•8 Tumer Trust
Thè Thomas J Home Memryiol
Trust
The Grantham Yorke Trust
The Sheffield TON￿ Tnbst
The ￿c￿hall Charitable Trust
The D'oyty Carte Charitable Tnmt
Jeans 4 G8n•8
The Bunzl Famity Chantable Tnjst
Thè BCH 1971 Charitable Tru¥t
The ISED Foundation
Tho StCrkV￿II Clffe TFUJt
1.500
8,000
20.000
10.000
20,000
10,000
10,000
1.000
2.000
500
1,500
1,500
150
8,000
5.000
15,OlX)
15.000
40,000
1.000
300
5.000
10,000
18.853
18.853
7,000
700
500
4.000
7,000
7,000
1,200
500
4,1)00
1,000
5,000
7th)
4,000
5.000
8.000
2,300
2,000
100
5,000
750
20,000
1,000
1,000
1000
20.000
12
20
Oup%

Tho Neurofibromatosis A￿oCIation
Report and Financial Statements
Year Ended 31 October 2025
Expendituro
&cikn
NF
Nurn
T(rtal
Co•t• dlw•ety •lh)¢•W ts>•*llwW••
1￿￿d9ntAud1ty1 Fo•
Fundrnhkng
35.133 40.9S2
198.758
198,758
NSA
108953 108 953
34 804 108 953 462,301
8ff ¢c4ts
1031
4A43 8304
.l(Kl
0,349 JO,035
14&
313
447
2.1ffi1
457
Pr•mh
22J8
15,851
3,301
28,011
1,152
Prfn1￿. and
IT, taephoTh• aThJ fax
47
143
2.gS1
822
4,9
1.714
51.670
85 708
Total
2S0329 94804 119829 048010
•• •lkx4ted oixstsff ¢x4ts
Fkn¥J8t Cc*ts
It etc
21

Tho Nourofibromato8i8 Assoclatlon
Report and Flnanclal Ststements
Year Ended 31 October 2025
S. Not Incoming R•sourcgs for the Yoar
TNS 1$ stste(l atsr charges..
2025
2024
unaudited
Depreciation
Independent A￿jit Fee
3605
3042
2904
Staff c￿1* and nUffl￿rn
2024
2025
Unaudrted
Sal#rieJ and wages
Social security co8ts
Pènslon costs
253,722
17,549
5,759
219,175
14,051
No employees received emolumnts of morv £80.000. ¢h•rty opwates a pn•lon #Ch￿ lor Its
employees, as curmnty requlred.
The avwage number of•mployee8 durfTrJ year. c*ulatsd (#) the of ful￿10M￿ equ1va1e￿ts. wa8 88 folknvA."
%)25
2024
Unaudrfad
CEO
Membership Secrntary
ITnnfomation
Fundraising
Spoclallsl Support
Chgnge manager
Development man8gern
&r
Tr￿1•• r•mun•r•ll¢)n
No member¥ ofthe Boar(l of Tnmteu receNed wy reff￿neratIOn, or dwlng year. a8 tr
previous financlal year.
There ￿re no Related Party Transact¥)ns 4*Ying the y83r. No Trustee, er cther per8Cft re&tsd to tho charty, had
any personal interest in any transxtion.
Taxatlon
As a ¢harTrty, The Neurofibrom*￿ A*s￿la￿ is exempt fr(xn tax on in¢tir￿ and gains falling within section SOS
of the Taxe5 Act 1988 or s256 of1he Taxation of Ctwrgeable Gain5 Act 1992 to the extent thatthe8e are ￿pIled to
its chafitabie oty"8cls. No tax Charges have arisen in Asscoalion.
TUMOV

The Nourofibromatosis Assoclallon
Report and Flnancial Statements
Y￿r Ended 31 Octob•r 2025
10.
Tanglbl• fix•d
2025
2024
Ua#udilg0
Co•t
AS at 1 November
Add￿On#
Removal of fvlty depreciated
a$8ets
As al 31 Oth>ber
16,205
2,841
11.636
4.589
ACC￿Tru1atsd d•prKlatlon
As at 1 November
Charge fof the year
Removal offulty dO￿atsd
a$set8
As 8131 October
13.921
3,605
10,879
3,042
13921
N•t book val
A8 at 1 Novemtor
A8 at 31 ¢3ctober
2284
757
11.
Dobtorn
2025
2024
Unaudlle
Debtor Control
Rent Deposit
Other debtors
Prepayments
2,642
72
12.
Cv•dltorn: am¢)un¢• falllng du• wlthln on• y
2025
2024
UngudilÉ
Trade Creditors
TaXa￿On
Lottery Gr8nt
Other Creditors
A¢¢rual$ and deferred in¢ome
18.811
8.669
1 S,427
4.791
14.324
71.751
20,587
47,410

The Nourofibromatosis Association
Report and Financial Statements
Year Ended 31 October 2025
13.
Analysis of not assets b•t%w•n lundi
T¢)tal
fund•
fund
fund•
Tangible fixed assets
Current assets
Current l￿bilIti.
1.320
739,571
113.554
1.320
768,252
113.554
656 018
28.681
Unre$lricted reserves lotslling £627,337 have been carried forward, bLrt 80.4% of this figure, £503.870 is already
designatfjd oxpfjnditure, due to the number of y￿r ¢(￿tracts *Mth NHS TrLbsts for tho Specialist NF Nurse
posts, the head office rental ¢ontra¢t and other ¥pe¢ffic projects.
This leaves a figure for free reserves of £123,486, for exPerKli￿r¢ in the next finaTr>•l year.
Mov•m•nt In fund•
At1
N¢wwnbw Incoming Outgolng
2024 RMour¢•• R••ourc
At31
Octob•r
2025
R••trlct•d Fund•
Support Gfoup*M•di¢al Info Days
ResearchlSFrt￿l1st Support
Nefv￿rk
Awareness Campah3ns
NF2 AcJvttle8
2,120
2,880
1,057
86,230
33,853
86.230
24.428
750
113.528
1,057
9,427
16,068
22,126
120.083
28,861
unr88tn.cted Funds
626,491
435.329
434.483
627,337
Total Fund•
648,617
555.411
548.010
6S6.018
PuTF*)ses of Restrfded Furth:
Support GroUp￿med*al Inlo Days.. fvndkng restrlthd for eyTr*¢ure (n Medkal InfOrMa￿On Days
ReseaTchlSSN'.
nding restricted for expenditure on Re8earth
NF2 activities..
fvnding restricknJ expendbture on NF2 activ
Awarene8$ campaKJn￿Mfys'.
fvrKling rnstncted for expenthlure on irrfom)ationlmeetings
15.
Flnlndal commltments
At 31 Odober 2025. the charty had annual commthents uThJer norpcancdlaljle werabThJ leases. followrs Tent
renegot*atJons, as folkn￿.
2025
Explry datr:
Not later than one year
Later than one year a￿1 not later than fve ye
12,000

The Ngurofibromatosis Assocsation
Report and Flnanclal Slatsments
Year Ended 31 October 2025
16.
Rgconciliation ol profft to ngt cash {outhow)finfi¢Jw fr¢xn ¢)pgrnting activitie¥
2025
2024
Unaudited
8urplu¥llDoficlt} for th• y••r
7,401
Adju•tm8nl8 b) profft y••rb) r*t
Cashftow from operath)g xllvlt1￿.'
Depre¢ialion
Flnanc8 Income
3,605
128.902)
3,042
(13.3141
Wortlng Capttol MI)￿Nn￿
{InGrOa￿)IdoGrea8e in debtors
(8701
(66,8801
25,340
Cuh •b•orb•d by Ow•tl¢M
17.
The preparallon olthe finandal statements requlw man•gem&rrt to mak• judg0￿rIts, •stim4tg8 arKI
488umptions that affect th8 amcmjnts rnport•d for as￿18 and Irabilrfies as at the balancg sheet dat8 and tho
amounts reported for revenues arHI expen8es during the year. How*ver, the nature of estimatlon means
that actual wt¢onx8 COU￿ diffw from th080 ¢stimate•.
Thero *ro no key jWmonts. Tho main *£ountiry estimates are dew￿￿'on and xcruals.
25