Dotxslgn Enveknpe ID.. 93D86491￿&6c4E624S22-￿E4AF8A8D22fj Cljarity registi"ation nuilib￿.: 266071 National Association for the Relief of Pagets Disease Annual Repoi'l and Fillancial Ststenienl foi. Ibc Yeai. Ended 31 Decernber 2021 Docustgn EnvelopE> ID.. 93DB6491_008C4E62.B522.DE4AF8ABD228 National Association foi- tlie Relief of Pagets Dlsease Content8 Refeicnce and Admillists'ative Details Tiustees, Repoit 2to7 Stateiknent of TAiistecs' R¢sponsibilittes Independent Examin￿'S Report Statement of FiAaneial A¢tivitLes 10 Balance SILeet Notes lo the Financial Statenients 12to23 D(￿USIgn Envelope ID.. 93DB6491-006C4E62-8522-DE4AF8A8D228 Natioiial Association for I'IAe Relief of Pagets Disease Reference and Administi'ative Details Cli%rity Reglstt'atlon Nuinbei. 266071 Pi'lllclpal Offitt Jactin House 24 1-Iood Stt'eet At]c<)ats Manchestei. M4 6WX Trustees Pi'ofes501' Stuart Ralston, Chai¥ Profes%oi' Robeit Layfield, Vite Cliaii. Professoi. Gi'ahaiii Russell, Honoi'ary President Di. Slieelagli Pari'ow Ms Alllallda Sl)ei'wood Ms Icely Butii)a Professoi" JeiEilly Mai'k Wilkinson Ms Eve Btrry Dr Faizanui. Raliina Mi. Mohan)ed El Ei"15￿ appointed 27 October2023 Mi. Alan Martin. appointed 27 October 2023 L AlÈn J2nes, i'esigrAed 27 Octobei. 2023 Dr C.&tlicrinc Naim. resigned 3 Novcinbei. 2023 HeleD Binns FCA B¢ev￿. and Stt'ut]i¢rs One Expi'ess l Geoi'ge Leig]I Street Mancl)ester M4 5DL IndepeRLdent Examiner BankeY8 Barclays Bank plc l Mai'ket Strect Bolton BLL 3NJ Investhn￿1t Mxii•gers Evelyti Parknei Royal Livei. Building PieT Hedd Liverpool L] INY Page L Dacuslon Envelop910.. OJDB64g14)08C4E82-B522.DE4AF8A8D228 National Association foi. the Relief of Pagets Diseas¢ Ti'usteesil Repoi't The triisiees pi'eyent the annual rBPQI'I logeiber witli tlie finan¢ial stateinenls of Ihe cliarity for Ilie yeai. ended 31 D¢￿Mbe7. 2023. Oblectlves and activltle5 Objects uiid oriiis The Pagel's A5SQ¢l&tioi) is the oiily ehai.ily in tlie UK wliose rel￿( is solely Concei￿ed with p¢oplc with Paget'6 Disease of Bone. Tl)c biDad ain)s of the Association are to pvovide illfoixnation and support for i)eoplc with tliis Loftdition alld tlieii. £￿lIllIes., lo iaise awareness ab(wt the condition ￿l￿ngst die genei.al public and within tht Inedical and allied heallli pi'ofessions. and to svppoit Ind fuiid i'eseaY¢li piojects in the fIeld of Paget's Dise4se of Botie. Piiblie beiiefii Tli¢ Paget's Association is a]J in¢lusAve organisation wliidi promotes the well-being of all people diagnosed wi Pagei's disea8e af bone, theii. faiiiilies and cai'eiE, We pi'ovidr illforii)ation to people affe¢ted by tlie condition and also provide infornjation and advice lo licalthcate pi'ofessionals iE8ponsibl¢ foi" deliY¢i'i¢JR tlieir care. Tliere is no cliaige for diis 5eJvice. We woJ* to end ilie isolatioii of pethplc wtili Paget's diseasc al￿ enci)urage Ihcjn to take conlvol of theii. ¢ondilion alld tiEatmeRt. We otTei' educational aod sociul opportLlliitics via our Pagel Iiifoi'matioii mcctings whicli al'c fre¢ of cliarge and open to anyone witji an iiitrirst sn Paget's disease. The tswtees ¢onfirLn tliat they have complied with the I'equiien)etJts of settion 17 of ttic ClJai'itie8 Act 2011 to have due AEgdYd to the public benefit gL]idance published by the Ch￿lty CollimEssion foi. Engl4]￿ aiid Wales. MÉiiibei¥liip Manbersliip of the Association is open to anyone who has an interest in Pa¥et's disease. Tliis i#elydes those affected, tlieii. relatives and Car￿￿, as well as scicntisls and l)talth￿re prvfc&sionals. The CiiiTent subsci'ipti4Jn foi. tnembership of dic Association tn LfGeive tjie quarterly newsletter is £15 al￿￿M fur UK inembers and £25 foi. overseas mellibers. PiY)fessional n]cA)bu%lJip is fi'¢e (>f C1￿1'ge. knfornmtioty Meetings al'e geiiet?Ily fi'ec of ch￿'ge to eiicoLu'&g¢ iiiaxinium pai'ticipatÈon but o¢¢a8ionally a Sil￿]] fe¢ limy be charged lo help defixy costs of cat￿.￿n¥ and venue Jui'c. Page 2 Docuslgn Envelop8 ID.. 93DY649l￿ec4E6?-Ps22-oE4AF8A8D22e National AssociAtion foi. the Relief of Pagets Disease Tru5tee5' Report (coiitinued) Acljleveinents atid perfot'i)iane¢ f StITart Ralston. Tl)c eveiit was open to anyone who had quei'ics or cunceims abolit Paget's dise2se. Reseoicli 111 2023, two si￿all reseai'cli gi'ant5 a13d one ediication&l grant were Made. Oi)e reseai'cli award w&s ii)8de to Di. Adrian Heald, Consultant Endocrinologisl at tlit NDrilien] Care Alliajiee NIIS Fouiidation TrLiSt, Salford to investigate Ili¢ Eillpacl of COVID-19 on tlie cure of people willi PageL's diseasc. A second iesearcli awai'd weill io Danicl Scoit at the Univei'sity of Nottinglimin lo establish a Pagel's disease of bone stein cell baiik. Tlie w1nifi.￿ DitclTrficld Ediicational awai'd was njade to L)ryJft si￿ltI1, Settlor Kecpei- at Noi"lon Pi'iory MLiseiEm and GaId￿ls. The Associalioo Continues to support r￿Cal￿h *nLO Paget's through grat)t awards and ba8 a poitfolio of resear¢h grants already in progress Wjtli ongoin£ col￿￿11t￿¢￿ts of £1 11.051 at tlie end of 2023, altbougli Ilie Ti'uslces dccided tliat no n¢w coiyunilinents for res¢arcli should be made as of January 2024 due to a detiease in legacy in¢oJne. The Association has a long history of fi￿dIng higli quality i'ese#i"cJk piDje¢ts tI￿t advanee undcrs18nding of tlie eausts of Paget's disease andloi. ￿0VIde &itw insights iiito inana£eiiJeiil of tlie di8eusc and tlie prevetttioii of on)plicatiotis. The AsSOCj8tioii invites applic&tioiis for ￿'allt filiiding thibllgli 2dv¢rtisellJeJils on its website. Fach aPp1￿c8t10rn is assessed by the Trustc¢s, ali exterllal Rcscarch Grants CoJ))miltee {RGC) artd ext￿.￿Al peer revicwerE aTxd gi'aded agaiI15t the s1)e¢ific eriteria and t'csearch objcctivcs sel OLlt by the Reseaitli sub-LUlllnitttee (RSC, fonkned f¥oiii Tii]slees). Soin¢ Trustees undeitske reseai'cli, Irlated lo their cillp1oy￿cn4 within i'eseaidi facilities andloj. liospitals atid Enay receive fut￿Ill£ fi'um Ilie A8s0¢iation, via d)eir itEst(ttEtii)n, to C81'ry re¥earcli. Any d¢cisioMs made 16gardin¥ fijnding foi. these applicaliuns are niade indepet)dentiy fi'ona t]ie Ti'ustee who is iiot perinitted to take any part in tlie dccisian-making pIDc￿. TIIC same principles wply to fui)th'hg of gr￿ltS involviog scicnlists the saine institutioii as a TJu%tec. An iniportant part of tliis process is tlie iY)le tsf lay people in tlie deciqion tllakin& irgarding the JElevaiice of ihe applicatioijs to t]ie A*%oeiation's obje¢tive5. Eacli successfi]l applicant is i'equii"ed to pi'avid¢ regulai. i'epoits on the pi'ogres8 of Ilic piDj¢¢t foi. the RSC and foi. the A5socsation's ineinbe¥s via die Inagazitte. PFocEduietrfoi- uivardiijg ie5eaieh gpciiii.t Tlie Rese￿￿1} siib-coinniittee (RSC) Is responsible for oveiall stratcgy iEgai'ding setting an amiual budget toi. IEse&reli and upon deciding upon tlie range aiid types of awai'ds that the Association should suppoi't and makes direel i'econ*Lciidations to the bO￿.d iElated to fulldiiig of sniall￿. awai.ds {1￿5 than £10,000), Howevei., decision5 on whicli la1.8￿. pJx)je¢l granls (typically inore tIMn £10,000) should be awavded lias been d¢legated lo an exleimal RGC wlTricli was established in 2019. To itsitiiiiiise Ilje i.isk of contli¢ts of Int￿Est, Tiwtee8 decided that tlie RGC 51iould be Cliaired by individual wit]iout a specifjc intEI'e5t ill Paget's disease a¥]d have a metllbership of seientisls and clinicians wlio do not have a diiECt ￿Seal.ch intej'esl in Paget's di.8ease. At Ilit pi'¢scnt titne, tl)e RGC is chdiird by Piofessor Tun ArnetL froni UnivoEity College Lojidon and Pl￿£ Emina Diiiicaii {King's College Londoii) as piDfe5SiOllal Jnemb¢i"s aiid Mrs Elizab¢ltL Gi'een as a lay inanber. All largei. alit applicatioiis are sent for exteri￿] peeT IEview aiid fvnding decisio]￿ i￿ade based on Ili¢ i'eviewei s I'epoits arkd tlie RGC5 assegsii)ent of these J'¢ports. The RGC then inukes a recoi)un¢Jidatioii to the RSC about which 812iitS 5hoLild be funded and tlie RSC I'ecottunendations are iaiifjed by tlie board. Tlii'ougli Iliese ine¢lianisins, tlie AssocEation 1185 a robust and trallsi)aiEnt systein for awarding gi'ants. Pagc 4 Docuslgn Envebpe ID.. 93D864914X)8C-4E62-B522-Dg4AF8A8D228 National Asso¢iAtlon foi. tlie Relief of Pagets Disease Trustees, Repol't (coiitinued) Fln21EelAI I'evieiw Policy oil rEsei'vÉ.¥ lil delemiining appropriate level of rewve8, tile bogTd has coiitinued to ¢ottsidei' both opeiating costs wl)icli have liistorically been ￿latIvely stoble and the wide vayialioii in annual illcome wlii¢li has predoiiiinanlly ai'isen froin Icgacies. Tlie Boaiyl bas ag¥eed Ihat i'eseivcs sliouLd be in place to covei. at least 24 nioiiilis opeixtlllg exp¢ndityre. Tlie ai)nual op￿?tillE expettditwe in 2023 was £228,400 {2022.. £329,464) wliirh comiprised £154,650 (2022.. £283,523) foi. Gharitable activilies and £73,75012022.. £45,941) foi. dttivitie5 Eelated to 12ising fi￿d$. A suin of £15,628 (2022.. £124,480) was allocated to Reseairli. Tlie Board conllliues to i'eview operaliiig costs to identify and iiiiplement pottntial savlligs which will enablc the Associatioii to iiieet its ￿lleY on yeS￿'Ves. Notable SaV￿ligS iniplemented during 2023 iiicluded closure of oui. officc in Api'il &nd el¢xting not to replace our office manager wlio rBtired in 2023, witli a coinbined annual savill8 of about £44,000. Net assets an￿ll￿ted lo £660,439 ai 31 Deceinber 2023 12022.. £76?,1661. 'nie balance of thnds lield will be invested to generate incoille to covei opeiating eosts, supporL llew fiittiir i'e5earch gi'ants wh6re funds perjbit, and to mitigate ii)e witcrtainties of reliance onvoliintsry incoine and legacies. InveslNieiiiiJolicy oiirf objcclives The ptvpose of tlie iDvistsnents is both to ￿'0vide incomc and ¢apital apprcciatioii. Tlie Association's snvesttnenl policy illvolves a balaiice of poitfolios. TJL¢ Trustees instr(ictcd our inyesthient iithnaEeis to illove about 75 % of. tlie AssociAtIoi)'8 inVCStll]ent ittcome into a Casl) aiid Cautious Bdi)d poi'ifolio that is loiv i'isk wliile still offei'ittg good re￿r￿s aiid reduced management fee%, dftei. seeillg underE)erfoimaiice itt the portfolio. Tlic icmaiiillig 25 lo of the A5S0¢18tjOilS lllve5tinent inconie is in a portfolio tlial 18 Mcdiul￿ risk. The fitiancial Ttpofts ￿e reviewed al eacli board ineeliiiR to ci)sui'e d)at tbe inve51iknenL8 Al'c iici'forming favourably in teriiis of Ihe UK Consul￿er Pi'ice Indux (CPI) and income generatinm. Tlie Tnlstees have all elliical policy not to invest Jn certain types of Companies itt view of the natLire of the Charityls aetivities. PIAns foi. futui'e peyiods AiffNs key obJeet£vesforfiiliirÉpÈi'iods PatienL inforinalion evenls wÈll be held in pei'son iii Junc 2024 in Canibiidge a￿d Septcmbei 2024 ii) Middl&fbi'oiigli. This supplenients tl)e ongoing woi'k to pi'ovide ¢ontellt and conlaLt points rcin(rt¢ly by plionc oi. on-lille method5 as well 08 newsletters tluougli tELe yeai.. It IS OUI- iiitention to ehang¢ tl)e statt)s of thc Chaiity to a Charitable Ineorpoi?ted Organisalion {CIO) during 2024 01. 2025. A Ibotion to cliaiige to CIO status was &ppi'oved by th¢ tnembership of the Associatiot* at its AGM ill 2023 and we al'e in tl)e piocess of finalisillg eur subinissÉon Éo tlie Cliarity Coi#n￿ssiOn lo incorpoi'ate as a CIO. The Trusiees have iioled witli ¢oiicerll tjiat legacy incomc wliicli lias li'aditionally ulldetpinned I'unning of the chai'ity lia5 di]￿illI$hed ove). the past Iwo years. Tlie cliai7ly ba5 ali'eady slai'ted to focii.8 on fuiidrai%ing dui'ing 2024 to ensiiie Ilie long-ttmi 8U5tainability of tlie oiganisatian wiihoiit tlie ijeed to eli8vge fot. setvices pyovidcd. Tliis includes encoiwaging suppoi'teis to donate to the Ghaiity eitlicr diIr¢tly oi. by lioldiiig evet)ts and SLlPPOrting Jiu2neii in tile London M&L7tiion with a proirnse of i'uillieis each raisiiig at le8St £1,500 iii spoiisorship. In older lo reduce Costs, the Tiu8tees liave i'educed the nuJiib61' of face-to-fac¢ board nieeting5 froili four annually to two ￿mi￿llY gnd i'evei'ted to a virh]al boal'd Ineeting for two of these. Tlie tiustees Iiaye also decided to pause i'esearcli ￿nd11￿ foi. the til￿¢ being. The Assocsatiott I￿S also iinpleillentcd a prog¥aiiiiiJe of grant appliealiolls lo lielp fiind infoi.malioiJ evellts as well as specific a¢livities already undertakcn by tlie cliarity such as ei)l)an¢ing our use of GoogleAds lo reacli a widev aiidience in need of 811pport. Finally, it is OL￿ intention lo increase IneJnbci%l)ip fees by £5 annuilly boili foi. UK members and in￿'national ittembeiE and to offei. cxisting inembers tlie option of receiving our magazine by email instead of by post, to reduce prsntirtg costs and postage costs. Page S Do￿SIgn Env8k)pe ID.. 93DB6491Q08C4E62-B522-DE4AF8A8D228 National Association for the Relief of PAgets Disease Tvustees, Repoi't (continued) struetuft'ey govei'nlliice Aiid inaiia¥¢inent NaliiiÉ ofgoii£i'iiiii8 dociiiiieiil The National Association foi. Ilie relief of Pagel's Disease was tottnded in 1973. It is ali ullincopoitled associaliofi governed by a Cotislitution and irgistei'ed with t]ie Cl)arity Coimiiissioii. During 2009, tlie ehai'ity adopted tlic woJ'kii)g llame of Tlie Pdget's Associalioll and tliis is the iiame to l)¢ Used li) tliis i'epoi'l. SiriicliirÉ olllAE AssocirtfEOII Thc Board of 'fil￿teeS is responsible foi- 5ettillg the strotcgy alld policies o£die Paget's AssociAtion. Thc Boai'd has up to twelve n￿MberS aiid has three sub-coinniittees. Tlie role of these is lo t<)nduct a detailed ai)alysi8 attd i'eview of the ai'eas foi. which they are responsible, and to give strategic advice to the Board to fac2litate deliveiy of the objectives of the orbF4nisatioll. Re¢OMnie￿1datiai￿ of the sub-coninitlees are i'¢ported to and ratified by tlie Board ofTii]5tees. Thi'oughout Ilie period, the Finance Siib-cominittee was cljaired by Eve Beriy, the Techt]ology Sub-cojnmitlee was chaired by Di. Slieelagh Faill'ow aiid the ReseaiElI Sub-conuiiitite was ehaii'ed by Pi'olessor Rob L&yfi¢ld. io d￿Y f'iiiiiiliig ofilie As.focialioii The day to day rnnntiig of Ilie Cl)arity is undertaken by $￿ff, woi.kinE I'einolely to save on aiiei'atlllE costs and in iecogwlion of tlie cliaiigc in workEllE Vl?Ctice8 iii J'ecent y¢&rs. Curj'enily tlie Asgociatioii einploys twn fvll tiine TrembeiE of staff as at 31 Dcccni6cJ' 2023, a reductioll of one dftei" tl?e offjce m#i)ager J'etired in Ayril 2023 wIIiLlI is also when thc C.liai'iLy relinqui51icd the atyice space. These ale an Opev4t10115 al￿d EngagenKnt Mallager and a Specialist Niiisc and Dit'￿t0¥ of Educational R¢souit&E. F.mploye¢s of tlic Assotialivn al'e line In8nag¢d by the cha￿l￿all of tlie Associaliou wlio Conducts armual Staff appi2isa16 10 i'eview pei'foimancc agdiiist objective8 for t1￿ pirvious ye￿. alld lo set objectives for the coniing year. The organisation81 st￿¢t￿.¢ of tl cliai'ily as of 31st De¢eniber 2023 is showji in FigLwe l. PaÉe 6 Docuslgn Envek)pe ID,. 93DB6491-OOaC4E824522-DE4AF8A8D228 National Association foi. the Relief of Pagets Disease Ti'ustee$' Repoi't (continued) Vigui'c l. Organisitional Sti'llctlkT'e of tlic Paget's Associatioii Digiiil CoininiiEiiclllion5 #1 Matkeiiiig S￿e￿I￿lI1]il¢¢1clL0lr, Dr. Sli¢clog)i F8rrow Rc5cllr¢li sill￿￿117111t¢e (Cliati, Ms. Elpo tlcny) IClIDir, Prof. Rab Lnyfieldl D￿rd tsl'TNsttts Iclwir. Prof. Sill￿rI B￿¢stOl1) Operoliots Eiigogoiiie MDiias¢r Sp¢cialk&tNurse Ltiid Dirttlor or Edvcaltoiilll Restrwocs (Ms. J41 Wood￿,￿rtIlI IMS. DID1￿ Wilkiiisoiil Reci'iiFthteiil uiirf appoiiilni#iilofiriislee& Advei"iibLiiienls foi. tiuste¢s Er¢ posted oil tlic wcbsite of ilie Asgociatioii wlien a pos*tion becuines availablc. PIDspectiv¢ Irnstees n￿Y apply hy c￿lt￿ctIng tlie Chaiiinaii of A8so¢iatioti by lelter ui. eiijail. ThEir suitability foi. appointsiierti ig thcn discussed by the Boai'd of i¥uste&%. If tbe prusi)eLtivt candidat¢ is Ihouglit to be eligiblc to act as a ti￿ste¢ and is tliougbt to offei. expei'tisc tliat wi)uld benefit the Charity, an illfoT11181 itjtervicw is set up with the Cliair aE]d otlier repiesentaÉÉv¢5 Of tlic Board. If ili¢ prospective cai)didate is felt to be suitable for appoitjtnienl followiiig tlii.% pi'uceduir Ibeir name is wt fo]waid l(J incinb￿S ofthe AssociatÉon for clecLion at an upcomin&T Aiiniial General Meeting of the AssoGiation. Tlic pi"ospective ti￿Slee niay tlien b¢ appointe(I bdscd on vote5 casl by metnbei's of the A$s￿latiOn. New tr￿tteS are piovided with a one-to-oll¢ trainsng sessiott by the Chairinatt of die BoRTd of Trustees who provides an overview of tliG duties of a tsustee, the aini8 of the d￿rIty, the ¢liarity's stnjctuit and pL?etical aspects relevant to ils day-to-day opei'atioii. Additional ts?iniThg 5essi011s al'e Olg￿nISed willi tkne cliai13 of Il)e FiDdrtce Sub-coJt)Ekiittee, the Reseai'ch SUb-con￿nittec and the Tech#ology Sub-coiiMittee, New tsijstees also I￿ve the optioti of attending traiiiillg courses Dll Ilie responsibilitie8 of chai'ity tiustees. Mlljoi, i.lsks aiid iAaii0ge￿e11I ofiliose pisks The TLllStees liave exainined the major strategic, business and op¢i?tional i'isks tliat the Associatioii fa¢es atkd coi)fLrni tI￿t policies ljave beei) esiablsslied to Cnsure regular irtonitoiing and rq)orliiig. Tliif will allow foi timely inteivelltioTr whett necessai'y to I￿sen these I"isks. 2816124 The annual reporl was approved by th¢ trustecs of tlie cSMI'ity on . and sigtied oi? its belialf by: Id¢0 trats1842ty15V4CB':'"" Pi'ole8s01' stL￿1'l Ralston TIu5tec Page 7 DacuS9n Envebpe ID,. 93DB6491-008C4E62-B522-DE4AF8A8D228 National AssoelAtioii foi. tlie Relief of PAgets Disefise Statement of Ti'ustee3' R￿ponsibIlitieS The Lrustees aic responsible for pi'ep2ring Ilic tsiistees, Iriioi't and ttie fillallcial 5taleii)ents in accoJ'dai)C¢ Wltli the U￿ted flingdoni A¢Lounting Standai'ds {Utsited Iclligdoin Gtneially Accepted AuLounting Pr8Cticel and appli¢Able law and tegLilations. Tlie law applical)le to cliai'ities I'equiiES El￿e tiiistees lo pi'epare ftiiancial statements for each finaiicial yeai- wliieh give a true and fair view of tlje stale of affairs of Ilie chai'ity and of tlie incoiiiing J'esouT¢es and application of i'estsuite5 of the ¢hdJ'ity foi. tlia( p￿.10d. l• pieparing tjiese finattcial stJtenFents, the tiiislees al'e i"equiird to.. sdect suitable accouiitiiig policieg ai)d Ill￿1 apply theiii consisteiitly., obsei've tlie Inelhods and princiyles in tlie Cliai'ilies SORP., ake judgeiiients and estiniates tI￿al ale iEasonable &nd pivdent. state whetlier applicable accounting standards liav¢ been followed. subje¢t to any n￿ttE￿al dep￿.tureS disclostd aiid explained in the financial statements; and piepare the fJii&ncial sl&teitteiit5 on tli¢ goll￿ coneeii basis uiiless il is ingppl￿priale to presunie tliai the ¢hai'ity will ¢ontiiiue in business. The trustees ale responsible for keeping prow" aceounling rccoixls tli8t diBclose with iEasonable accui?cy at any time the financx&l position of lite chaTity and cnablc ilittni lo ensiiJE tliat the fiimncial statements conii)ly willi Ihtt Charities Act 2011, the Cliai'ities (Accoiints attd Rcports) Regulatiolls 2008, and the piDvisions of ihe consti￿110n. The knisl¢es ait also i.espoi￿￿blc foj. safeguarding die assets of the chai'ity And hel￿e foi. taking i'easonable &teps for the i)ievenlioii attd deleclion of fi'aud and ot11￿. lllegul￿.1tl￿. The ITilStees are responRihle for the niaintenance and integrity of the coipoiatc and financial information included on the di2riiable company's website. L¢gislatiori bFoveilling ihc PTepai'ation and disscniination of financial slatell￿nts may differ from legislatiot) in oth￿. jurisdictlons. Appi'oved by tlie trustces of the cliarily oi1.28161.24 and signed on its belialf by.. Plor" ¥r"tRalslon essur TrLlStee uar Page 8 Docu&gn ENvebp8 ID.. 93DB6491-(M)8C4E62-85224JE4AF8A8D228 National Association foi. tlie Relief of Pagets Disease Indepeiident Examiner's Report to the trllstees of National Associxtion foi. the Relief of Pagets Disease l i'£poit to tlie ttusicc5 On iny exaiDittat1013 of the accoui)ts of National Associ&tioii for tl)e Relief of Pagets Disease foi. Ilie ye8¥ ellded 31 Deceittber 2023. RespoiislJ)iliÉies and basis of report As the charity Irustee8 of National Association (oi. tbc Relief of Pagets Disease you are iEspon8ible for tl)e pi'eparatioii of the aceoiints in accordanc¢ witli th¢ reqiiii'eincnts of the Cl)arJties Acl 2011 ('tli6 Act,). l ieport in respect of n)y exan]ination of the National As'sociation foi. the Relief of Pagets Diseas¢'8 accoiinls ¢anied out uiider scctioii 145 of the 2011 Act and in carrying oiit Iny exaii)ination I have followcd all tile ai)pliGable Daie¢lions given by Ibe Chai'Rty Coi]]n)ission uiider section 145(5)1b) of tlle Act. Jndepeiident exATniue) S stateittent I Iiave cotnpleted IDY exainination. l eonfii'm tliat iits inalcrial tiialleis liav¢ coine to my altettlion iii co￿le¢t￿On with tlie exaininatkon givit)g m¢ cause to believe tha¢ irt atty i)iatei'ial i'espect.. accounting records W￿.¢ not kept irt respect of National Association for tbe Relief of Pagets Disease IEqiiii"ed by section 130 of ilie Act. oi. 2. tlie accounts do not accord widi tl)ose i'ecoi.ds,' or 1. 111¢ 8ccounls do not eoinply witli tlie accountiiig iwuireinents concerning tli¢ forin and ci)ntellt uf a¢u)unls sel out in the Cljaiities IAL.coi￿ts aiid Repoilgl RcgLila¢ions 2008 oiliei. thatl any requirenient tliat Llie accounts give u 'trt￿ alld fair view, wliich is Jot a illatter consi(Ivi'ed as part of an indcpelldent exainiithtion. T liave t]0 collcerns alld liave come act'oss no othei. mattel's it) connection witli the exaininalion to wliich attention slioiild be dixwn in this report in order to enable a proper understatldiiig of the accounts to be reached. Helen Binns FCA Beevu. and Struthers Olle Express l Georg¢ Leigh Stt'e¢t Mancli&8lei' M4 5DL Date'..aE..l.,a.l..iQ.lJ. P&EC 9 Docuslon Envelop8 ID.. g3D56401-008C4E62_M522_D£4AFéA8D228 National Association foi. tlie Relief of P2gets Disease StAtement of Finaiicial Aetivities for tlie Year Ended 31 December 2023 Unre5ti'icted funds 2023 UtJi-¢sti'icted Cuiid8 2022 Note lueoJRie And lldoiyments fi'om: Donations Aiid Icgacies Other trading activitie5 EiivestiiieTiI illcome 50,751 39,272 88,924 23,143 13,160 Total ii)come 108,259 125,227 I xpeiiditui'e on,. Raising funds Chdritable activities 73,750 154,650 45,941 283,523 Total expeiiditure Losst%/(gainsl or investsnent a&8ets Net cxpendithi'e 228,400 113,414 329,464 59,132 100,727 263,3691 Net Imovenient in funds (106,727) (26q.369) Reeoneilration of funds Total funds brought forward Total fimds cai'ri¢d foi'w21YI 767,166 1,030,535 660,439 767,166 All of the chAi'ity's a¢tÉvittes dei'ive fi'om eontiniiillg operatiotts dui'ing the above two peiiods. The pi'ior yEaT Statemcnt oFFinaneial Activities is sliown UR pagc 23. The notes on page8 12 (o 21 forni ali integral parl of tl?ese financial statenients, Page 10 Docuslgn Envebpo ID.. 93DB6491_008C-4E62_B522.D&4AF8A8D228 National Associatioli fo). tlie Relief of Pagets Disease {RegAstI'Ation iiumber: 266071) Bxlance Slleet as at 31 De¢ember 2023 2023 2Q22 Note rixed a5$tls Iiitangible as5els Tangible a&86t% lllvesttnents 12 13 14 41,526 1,416 674,921 717,863 3,661 1,666 702,453 707,780 Curi'eiit assets Debio¥s Ca511 atbank alld in hand 15 80,403 48,273 81,739 209,949 16 128,676 291,688 232.302 Ci'editoi's., Amaunts fallÈrtg due withiii year 17 86,1001 Nct cui'i'ent (lialiilities)IAsgets (57,424) 660,439 59,386 Nel assets 767,166 Funds af tlie ehai4ty: Unrestricted lrteonie fuiids Unyeslricttd funds 660,439 767,166 Total fuThds 18 660,439 767,166 Th¢ fin8ttci&l Stat¥IT￿nts on pages 10 to 23 were appi'oved by the ts'ustees, and authorised for issiw Oll .28/6/21.,.. and signed oi) the51. behalf by.. cus￿r￿dbY.' Pl'oy. Ytiiai'l kalslon Tiwst¢e Tlie noÉe8 on pages 12 to 23 fai'iii ai) itttegrgl pait of these fJnaJcial statemenls. Page 11 Docus￿n Envebp810.' g3DB6491-008C4E62-B522-DE4AF6AaD228 National A$50ciatlon foi. tlie Relief of P2gets Disease Notes to tlie FSnai)cial Statements for the Year Eilded 31 Decembei. 2023 l AcLoulltlnE policles Stateinent of Co￿p[la￿te The finan¢ial stateincnts lTrave be¢ii pj'epared in a¢coi'dance widj Accounling Rey)rling by Chari(ies'. Stateinent of Recoi)miuded Pi'aclice api)licable lo Cha￿￿tleS piepai'illE tbcii. aecouiits in accoidance witii tile linallcial RcpoFtii)g Standard &pplicable in the UK ￿ld Republtc of IiElat)d {FRS 102) {effective l J811uaiy 2019) - (Charities SORP {FRS 1021), die FiJiatt¢ial RepoilEJJg St￿Idal.d applicable in the UK and Republic of IIElaiid (FRS 102) and tjie Charitie8 Act 2011. Basls of pJ'epRratloii National Association for the Relief of Pagets Di5e3sc meets tlic definition of a public benefjl enlTty undei. FRS 102. The accounts (linancial statemcntsl have been piepaird undei. the liistoiical cost conventian with iteins IEcogiiiged at cost oi. ￿.￿1}Saction value unless otheiyisc stated in tile relevant note(s) to tli¢sc accounts. Golng coiieern The trustees consider tliat there are no rnatei'ial uncedainties about tlie cliai"ity's abiltly lo cont(nue as a gaing liicome endowments Voluntary ilicon￿ iticluding dotjatiulls. gifts, legacies and gxants that proTrryde col'e fulldiiig oi" are of a general nature 18 recognis¢d when the ¢hai'ity I￿$ entitlement to the llie4)nie, it is pi'obable that the incDine will be rcceived and tlie aiiiount can be IM¢asuJrd with sufficient relEability. Doiiulioit& aiirf legacie Doi)ations and legaci&% are recognised on & receivable ba%is wheii receipt IS PLDbable and the &n)ount can be IEli4bly n)ea$ured, Gi'llAt¢s i¢ceiiiuble Grants are I'e¢ognised when Ihc cliai'ity I￿S an entitlement to Ihe ￿ndS ond any conditions linked to Ilie gi'aiils bave beti) tnet. Wl)ere pcifoi'in2llce conditions are attaelied to tl)e gi'3iit and al'e yet to be inel, Ib¢ incoiiie is Tecognised as a liability and illcluded on Ihe balance sheet as deferi'ed i1)coi]]e to be rele&sed. Jjiveslnieiil Intome Dividends are i'ecogniscd onc¢ the dividend bas been declared and ttotifjeation has been received of tlie dividelld due. Expettdilure All eXp¢J￿1￿1¢ ts leCo￿lsed once tlieir 15 a legal or constructive obltgalioii to that expenditui'e, il is pi'obable seltleiijcnt is required and the amount can be measured reli*&bly. All co8ts al'e allocated to tlie appli¢able expenditw"c lieading that aggi'eg&t¢ siinilar costs lo tliat Gategory. Wier¢ costs caiinot be directly 211J'ibuted to parLi¢ular lieadittgs tliey liave been allocaled 017 2 ba.si8 COllSlStent wilh Ilie J8¢ of resources, witli cenli'al stajy costs alloealed on the basis of time spent, and depi'eoialion cligrges allocated on the portion of tlie dssel's iise. Otlicr SLlPPOIt ¢osts are allocated based on tlie spt'Lad of staff costs. Ruisriigfiiiid5 i¢se air LosL% incui'i'ed in atliaclillg voluntaiy incoTll¢, the nYa]]ageinent of investment5 and Ilio%e incurird In trading a¢tivilies tliat i?ise funds. Page 12 DOcuS￿n Envalope ID.. 03DB6491Q08¢4E62-8522-DE4AF8A8D228 National Association foi. tlie Relief of Pagets Disease Notes to the Financial StRtements foi. tlie Yeai, nded 31 December 2023 (continued) Cliaiyiablé Nelivilie.f Cliaritable expeiiditui'e ¢oii)piises those G05ts' tncurird by the clthiily in the deIiveJy of its. a¢tivilies and seivices foi. its berAeficiarics. It InGludes botli costs that ¢Ao be allocatrd dlrectly to such activities and diose costs of all indirect nats]re iitcessary to suppoi't tliem. Gr4111 expeiirfiiiire Grajils payaiile att paynients illade to tlui'd parties in fvi'il)ernnce of tlie Charities, objects. In th¢ case of a untondition&l giat)l offei. 1Sus 15 acciued once tbe recipienL lus been notified of die w'8nt awarded. Tiiis notificatian gives the rEcipi¢nl a i'easoiiable expeclation tliat tlicy will receive tlie giant. Suppoi't eosts Support costs incl￿de ¢e￿traI fundiotis aiid bave beett allocated to activity ¢ost categories on a basis co1￿lStellt witli tile use (kf regoui'ces, foi ex81)Iple, allocating pioperty ¢osts by fioor areas, ()i' capita, staff ¢osts by the time speiit aiid other costs by Ilieir u%age. Goveriian¢e costs These include tlie costs aitiibutablc to th¢ dtsrity'$ compliance witli consti￿l(lo￿al and sidlulory i'equiremeiits, ltLc1L￿LnB audit, th?legic man3gement find ti"l￿teeS meetitigs and r6imbuiBed expellses. Taxallo Tbe charity is ￿ernpt frotn lax on iiicoi)ie alld gains folling wiiliin Section 5050 of dic Taxe8 Act 1988 or s¢ction 252 of the Taxation of Cllargeable Gains Act 1992 to the extellt tiiat these al'e applied to its cliai'itable objects. Intangible assets itaiigible assets are stated in tlie Balance Sheet at cost IG%s accumulated 8nMJLtisatioJi Rlld inipaiiiiiernt. They al'e amortised oil a sti?ighi li￿¢ basis over theii. estiii)ated usefi]I tives. Am(bJ'tl.sotloii Aii)oi'tisalion 1.% pi'ovided on illtai)gible fixed assets 50 as lo wi'ite off tl)e eosl, less any cstin)ated I"esidual value, over thei¥ expected useftil ecollomEC life as follows.. Asset cla55 WcbsitelCRM Database Amortls&tlon meth(bd and I'gte 5 yeai. $tEaight line Tanglble fixed a55et5 Ittdividual fixed assets costillg £IOO,00 oi-lnarc Are initially recorded at cost. Depi'tclatloil 81id ailloi'tls8tio Deprecialioii És piovid¢d on tangible fixed asset8 so as lo wi'ite off tbe cost or v21ualion, less aiiy esliinated T6sidual value, over iheir expeeted u5cfvI tc(Jiiomic life a5 follows.. A55el Clllss Fixed and fittings Dept'eclation Metliod ￿lId rate 15 /0 I"edu¢ing balance Page k3 Docu&gn &velopt ID.. 93DB64914108C.4E62_B522-DE4AF8A8D228 National Association foi. the Relief of Pagets Dlseuse Notes to tlie Finaiieial Statements foi. the Year Ended 31 December 2023 (Lontinued) Fixed 4sstt InvestiMeiitB Fixcd as8et jllVtslmenLs, otlier than i)i'ogi'4tmiMe related investmei)is, ait included &L market value al tlic balance slieet dale. Realised gains and losges on investillents aiT Calciilated as Ihc differen¢e betweell sales pio¢eeds and tlieir n)ai*¢l valiie al tkne star( of the yeai., oi. tlicii. siibseqiient cost, and ar¢ ¢liargcd oi. credited to tlie StaleLiient of Fillaiiciel Activities iii the i)ei'iod of disposal. Unrealised gains and losses represent the inavement in n)aTket values dui'ing the year and ar¢ ¢iidiled oi. cliai'gtd to ihe Stat￿llent of Financial Activities based on tl)e ittai'ket value ai Ilic yeai. emd. Casli ajid cash eq￿1valentS Casli and Lasli equlvalents ¢ompYise cash on hand and caIl depastts, and oth& shoi't-teini higbly liquid inv¢stnieJits tJMt al'e iEadily coiiveitible to a amount of ¢Asli aiid subject to an insigllifEca]Jt i'isk of diallge in value. Fund structui'e Uniesli'icled in¢om¢ fi]nds &i'e generdl fvnd8 that atE 2vail&blE for use at Ibe It￿SteeS éi5cI'etion iii fui'iliu2nce of Llie objectives of the cbai'ity. Pension5 othea. post i'etiiement obligati(b115 The ¢haJity opci?Icg a defit)ed conliibution pen$ion scliejne which is a pension plan undei wliich fixed ¢ontiibutions are paid i1)to a pcnsioii fund and tlie ¢1￿l'lty Iu8 tto legal or coiishucLive ubligation to pay filltlier Coiitributions even if the fuiid does not liold sufficient asse￿ to pay all eii)ployees the beiiefits relating to employee servite it) Ihe ciii'i'ent afjd prioi. pcriods. Contributions to dcfmed ¢onttibution plat)s art ietognised IEL the Statement of binancial Activities when Ihcy aiE due. riiRJRneiftl InstruitseiTrL$ The cljai'ity oiily lias financial assets and financial Isabilities ofa killd diat qualify as basic fiiiaticÉal it)struiMeiits. E3asic financial instiiiinejils air JtsTLially i'eLogn%sed at ti¥nsactioii value and subseqiieiitly ineasured at tlicir stttlcm¢nt valiie witli the exeeptioTr of investsnents wliich al'e i'ecogtiised at Jnarket Val￿e. Page 14 Docusign Env8bpe ID.. 93DB6491-008C-4E62.8522-DE4AF8A8D228 National Association for tlie Relief of Pagels Disease Notes to the FinaneiAI Statement$ foi. the Year Ended 31 December 2023 {coiitiiilled) 2 liiearne fi-oiiTr donations and 1¢2acies Uni'e5tillctcd funds 2023 UiJre$ti'ltted t'uiids 2022 Donations and lega¢ies; Donalions fi'oni iiidividuals Legaci¢s Gift aid itelaimcd Gr&nts, including capital grants. Graiits fi'oni oihei. cliarities 16,981 17,040 13,793 80,420 5,733 2,771 2,937 50.751 88.924 3 Ilico￿e froni otber ti'adiiig gctlVLti Uniesti4cted fuiids 2023 Unresti'icted fullds 2022 Ti'adillg incoinc, 200 Cliib Mettiber85iip subsCI'iPtions SwLdry Meirh&i?dise Sundry Fuiidraisiilg 4,640 4,165 38 30,429 5,315 4,490 42 13,296 39,272 4 Invtstiiient income Ullreftricted funds 2023 Unrestrlcted fullds 2022 RT]ter¢st ir¢¢ivable and siinilai. illcome. Intei'cst I'¢ceivable on bank deposits Otlier iiieon)e froti) fjxed asset ittvestillents 2,856 15,380 1,453 11,707 18,236 13,160 Page 15 ￿￿USIon Enveknpe ID.. 93DB6491-008C4E62-B522-DE4AF8A8D228 National Association fol. tlie Relief of Pa%ets Dlsease Notes to the FiTianeial Statements foi. the Ye21. Ei nded 31 Deceinbei. 2023 (c(Jntinu£d) 5 ExpenrfÈtui'e on i'aising funds Unresti'icted furid5 2023 AllocatÈd uppol't Costs Dii'ect tost5 Costs of tt'ading gctivities Investtiient 11)at)ageDient costs 29,154 6,026 38,570 67,724 6,026 38,570 71,750 Uni'estrieted funds 2Q22 Allocate xuppoi't costs Dli'e¢t eosts Costs of tladittg activities JiiYesti)Jei)t i)Yana8emeiit ¢08ts 7,661 6.051 31,229 39,890 0,051 13,712 32,229 45,941 6 Ei xpeRditui'e on chai'ltablÈ ActivÉtie Activity undertAk￿l dlre¢tiy Grant fundi￿£ of activity Aetivity siippoi* costs 2023 Support and raising awaJ'cllc5S Rest￿￿11 42,205 96,817 11,568 139,022 15,628 4,060 42,205 4,060 108,385 154,650 AttivAty iideR'takeii dii'ectly GI'HRt fuRidlng of actlvity Activlty suppoi't costs 2022 Suppoit aiid raisiiig &W￿.el?¢8S Researcli 46,585 470 112,458 12,959 159,043 124,4SO 47,055 111.051 125,417 283,523 Pagt 16 DoGuSvJn Envelop2 ID.. 93D86491-008C4Efj2-B522-DE4AF8A8D228 Natlonal Association foi. tlie Relief of Pagets Dxsease Notes to t]ie Fiiianeial Statenients for the Year Ended 31 Decembei. 2023 (continued) 7 Anily5is af govei'llanee support eosts Support costs allotllted to ¢]hAI'ItHble R¢tivltle$ Uiii'e8tYieted flind5 2023 GoveiiiaAte costs Support co$ts sis of allocatio Staff titti¢ Staff tiiiie Staff Lime Stafytiiiie Staff tiiiie Staff lillie Staff tit]ie Staff time Staff tinje Staff titne Siaff Costs Office Gosls Staff traiiiing IT costs Depreciation Bank charges Insut?ncc Cost of trustee nieetings Accountaiicy fe& Book-keeping costs 4,236 97,816 13,428 143 2,960 12,606 325 2,165 102,052 13,428 143 2,960 12,6U6 325 2,165 6,572 3,059 3,645 146,955 6,572 3,059 13,867 133,088 UIiT&%tJ'lcted fllThds 2022 Governance costs Support costs Ba515 of allocAtio Staff iiine Staff tim¢ Sraff tiirje Stalf tinie Staff tiiiie Staff tirtie StatTtinie Staff time Staff iiine Staff Lime Siaff costs Office costs Staff tl'ainiiig IT costs Depi'e¢i&tion Bank cliayges Insui?nce Legal and professional costs Cost of trustee ineetihgs ALcountancy fee8 11,950 107,172 16,076 95 4,550 2,813 543 2,422 119,122 16,076 95 4,550 2,813 543 2,422 20 8,759 3,246 20 8,759 3,246 23,975 133,671 157,646 Page 17 Docuslgn Envelope ID.. 93DB649l￿Oec4E62_8s?2.DE4AF8A6D228 National Association foi. tlie Relief of Pagets Disease Notes to tlie Finallcial Statements for the Yeai. fi nded 31 Deeembei. 2023 (continued) 8 Ti'ustee5 reiiiuiiei'ation lld expeiis&$ No U￿ste¢S, Jioi. ally persons corLfLCCte(t witli tl)ClD, liave iEc¢ived any ieinunei'ation fi'oin tlie cliai'ity dui'ii?g thc yegi.. No tiustees hav¢ received aiiy otlier beiiefits froiii tlie ¢harity dlli'ing tlie yeai.. DLiiing the yeai. ti?vel and siibsistciice expenses tolalling £4,873 {2022.. £3,357) wei"e i'einibur5ed oi. paid dii'¢¢tly to ten tLWtees (2022.. eight liustees). 9 StY4ff costs Th¢ &ggTeg&te payroll coslB were as follow¥'. 2023 2022 StAff costs dui4ng the yeai. Ivei'e.. Wage8 aiid salal'ies Social se¢urity eosts P¢nsion costs 90,601 4,203 104,507 6,254 8,361 102,Q52 119,122 Tl)e ￿￿￿tIllY aveY&ge nuinbei. of per.%nns lillclu