Charity rngistration number 1143472 (England and Vlalesl Charfty reglstration number SC041012 (Scotlandl Company registration number 07726882 SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES ANNUAL REPORT AND CONSOLIDATED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025 MPS Society MPS transforming lives through support research & awareness • xeinadin
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES LEGAL AND ADMINISTRATIVE INFORMATION Trustees Katy 8rcr•m Sarah Buryess Judith Evans Profesw Slmon Hea Professor Oeffatynn Hugh8S D M Patton Phillip Peawn Wilma Robins Fia Stewart Dr G McKe8 Se¢retsry Tonl EllertTh) Senlor manag8m•nt Robert Stevens John Ilkgnkowdn )[8 Thomas Group Chief Executive Head of Group Finance Senior Head of Patient Services and Cllnical Liaisons Head of Fundraising Head of Support Ex¢oAivoAs5istsnt and Coxnpany Setxetary HR Lead Head of CommuNcaiions He&J of Projects & Cofflmunities Anr¢ F11t[ Bethanh? P•ntecc&8t Toni Ellerton Barbara Cotterell Halèn Cra I Wi15 Charlty number (England 4nd Wales) 1143472 Charlty number (Scotlandl SC041012 Company number RegiBtered office MPS H$9 Repton Pla White Ltrjn Road BuckiThJhamshire HP7 9LP Audltor xnarfln Audit Limiled 46 Hamilton Square Birkenhead Wirral M&rsle Sollchors Womble Bcffid Dicktnsc 4 M(Ke LIy)d) RtversKJo Lond(M) SE12AU
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONTENTS Chainnan* statement Trust8è8' rèport 2-12 Statemenl ol trustees. responsibFlittes 13 Independent auditorfs repNi 14-16 Statement offinoNial tilieS 17-18 Balance sheet 19 Statement of cash flows 25 Notes lo the finanoal stsleThth8 21-42
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CHAIRMAN'S STATEMENT FOR THE YEAR ENDED 31 DECEMBER 2025 Last year was one of me8ningful prow for our communty. Guidg(I by our wsion that everyone affected by MPS. FaW and related lysosomnal diseases shjId INe the lives they Wdn( we have stren9then&d support. 8dv8nced dinical care and invested in research that will shape the fulurÈ. We Welrned 59 new memters and wntinu&Y to grow a C{neCted. surwtivè CLMnrnunty thrgh our WhatsApp groups and regular peer 5es5i0n5. The Rare Minds seNice dèliv8red 214 specialist cwnselling sessIcS, addressing th8 Sign¢nI emotional impact of livtn9 W5th pr(MJrgssive ra disease. Families ttsld us these Servi were'life ch8nging' and 0Ved rare Spa they feEt understood. Our MPS Matters cxJnferenc8 and f8mlty supwrt events rosS the year fyou9ht prIe together to kam, share and belong. Alongside this. our clinie21 liai5cn drove national impart. Progress on the MPS rWaY Project. development of th¢ EmgrgenLy Airway Passm pUbIK?t tsf 10 national dinKal guidelines through the PPPN. and strong advoGacy neYA)orn scseenirs dmStrate our CAnmilment to wortd-class. palient.¢xntr (afy. Res&arch remains centrd to our missvJn. In 2025 awarded dose to £130.CrfKI in grants, suppNting projects that Improve respiratory monIto, personalise tr&nent decisions aThJ anhar oualty of life. We atso began the joumey towa mberShip of the Assoaation of Medical Research Charibes. strengthening our research govemance and (llfity. None DI this would be possible wthout tyjr dÈdK3te(I staff. trustees, volunteels, din11 partners and generous supporters. Together, we are transfoming "Ve$ through S[eciLst suppcrt advoGaBy ar raarCh. and buikjing a stronger future for our community. Judith Evans Chalr of Trustees Dats.. 27 June 2026
socIErY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT (INCLUDING DIRECTORS. REPORT) FOR THE YEAR ENDED 31 DECEMBER 2025 The trustees (who are also the directors of the rthartty for the of Ihe C(xnp8niès Act) pr8sènt thair annual report together the oudited financial ststem8nts ol the S(K for MucoFdY5Gh8rJde Diseases Ilhe charity and the group) for tt year ended 31 December 2025. The finanaal statements have been prepared in accordan wilh pDlicies sel out in note 1 to the financAal statements Comp wth the charitys governing £kn(xJmenL the Companies Act 2006, the Charities and TNsteè Investment Iseotlandl Act 2005. the Chariiies Acryxjnts (S)a} Regulatiorts 2Q06, FRS 102 The Financial Rèporting Stsndard applicablè the UK and RepublK of Ireland. ihe Charities SORP "Accounting and Reporting by Charities.. Statewent of Recommended Pradice alcable to charities preparing thelr acujunts in accordance wth the Financial Reporting StsndaTd ap[e in the UK and Republ r)f Ire18nd IFRS 1021.. ObJ$¢tlvo$ and actlvllles Prlnclpal actlvlty To support indmduals affÈctÈd by Mucx)rK)lysacchari(le disease5, Fabry and related lysosomal diseases, their famifies 8nd the professionals who care for them through partnership worknng. implementation ol the individual adv2CY seTvice. increasing awaneSS and raing funds for research irrto these dise8ses. Objectlyes and alms Our vision is for all people affected by our diseases to live the INes they want Our misslon is to transfomi lives tlvough specialist kno%e(Ige. sUPPOrt and advocw armd research. Our goals are to ensure *1 our MmUnity have
ette$$ to..
exceptional support and worfd4ass din11 cor8 eff$ctive Iroalments In order to ¢yJt these goals we need to ¢¥erate with effective processes by: Achieving a financTral perforniance that is line with bLMJget and anning Investing In our staff devetyrnent Ensuring good govèmancè arrtt that thè ganIsaon is run in li relevant guKlance and regulation5 To do Ihis, w8 rety M: . funding from voluntary donalions. corporate thxK>rs. ¢haritatAo trLLgts arKI foundalions supwt from the putAic who fvndraise and lake part in events PLtbli¢ bgneflt The trus¢ees have paid sjue regard to gumlance iwied by the Charity Corrlnissw in deuding what actiwties the tharity should undertake. Wh org MPS and latF Iywsomal dlseases? Mu¢opolysac(aride IMPS), Fabry and laled lysosomal diseases are a group of rare. genetic diseases that affect the functioning of particular enzymes in the body causing wasle nwterials to accumulate and disrupt the functioning of the cells. People bom th an MPS or related disease are unable lo produce erLzyme5 e55ential for the continual process of breaklng dovm and r¥acing used rnalerpls. Babies May 51MJw no sign of the disease, but 8$ mor8 and cells be(x)mè damaged by the slordge of used material, symploms begin to appear. Sadly, these am progrèssfvÈ disèasès which lead lo an increase in problems as the years go by. Effects of the disease vary but a 1 asSlated with progressNe physical disatslity. Over haw these diseases cause degeneration of the brain resulting in severe leamir•J dnTKulti8s and death in childhood. We support people vkno have ore of 27 diseases. The fijll list of condrlions we support is.. MPS l Hurter, MPS I Hurfer Scheie, MPS I Stheie. MPS 11 Hunter. MPS 111 Sanfilipp). MPS IVA MoTquiD, MPS Vl Marot8aLlX-Lamy. MPS Vll Sly, MPS IX NatOWiC2. Fabry disease, ASpalY¢0$aMIfiUna (AGU), Fucosidosis. G8180 Physi¢ Dysplasia. GM- 1 Gangliosidosls, Lysosomal Aod Lipase DefiiY8rw {L4L Dl. Aptha-mannosidosis. Bets-Mann05idosis. MSD Muftipk sulphatsse defiticy. MetaChrOmat Leuk(tytrophy, ML l Neuramilase Deficiency. ML 11 I11 disease, ML111 Psetth HudÈr Potydystrophy, ML IV, Sialic Ac*J Stwdge Disease. Winchesler. Gaucher and Farber disease.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Achievements and p•rfomnce Support and Communitle¥ In 2025 we worked to itnprove Ihe qualty of lrfe for peoth living MPS. Fabry and relaled conditions by strengthening our community, expanding access to SP8¢i81ist errK)lial supporL Improvi kn(rrtledge. confidenc and self-advotscy. and makiThJ jre membet diredy shaped our services. A strong community We welwmed 59 nèw mèmbÈrs, includiTr3 indivhjuals and families affected by Fabry. MPS I. MPS 111, MPS IV, Gaucher. ML cOndinS, Mpha mann0sid. MLD arKI LAL-D. Thi5 growth rellects increased reach, eartier engagement folk)wing diagmsis and gr8a18r 8vfdrene55 01 avaikble SUPFtrft. A r8r& disease diagnosis can be arJ needs the supwmt of 8 crynmunty understands. Thg infomal p89r nthork overseen by our SuwrtaThJ Communities T88m gr8w thfis yearto indude.. . 15 privat8 WhatsApp groups with 200 members between them 300 mgmbers in the private Facebook supw¥I hub Weekly staff.led engagement a(oss #ll wre groups Consistent peer-t¢>peer intéfdthn in hi9h-eMeftt communities Regular virtual coff99 rnorning5 and weekty peer suwort s8ssi$ dele year-round Groups supp)rt8d indude: co15t)n-Speejfic communitie5 IMPS. Fabry. Gauth, MPS 111 p8r8nts) Dernographic groups (young alults, parents and carers, bsroaved members) Regional c4)mmuniti&s (Northem Ireland. wes, Scollan¢J) Membership and ry)mmunty engagement groups (ATnba55thr8. Rare Voices) Peer-led Initialwes {Swap Shopl Members rew)rt feeling undersicxjd by peop who "get if vthith r#)t found outside the rare disease community. Sp¢clalbt emotSonal support Last year 23 new cllènts aceessed Rare Mlnds counselllng. delivering 214 speclallst eounsèlling sesslons to dults livnig with rare disease or carirvJ for someone who ts. Living with rare, prctyJressive conditions brirws svJnificanl psychologkal burden. Counsdling data shows that m8mbars m05t commonly exp.n¢e: Anxiety and fear 8tMXJt the fijlu{s5%) Uncertainty (65%) . Worriès about disease prc4JresslDn {52%) Stress linked lo tfeatment. ar lests148%) Parenbng a child wtth a conoition143%) Grief. loss an¢J adjuSt139%) Rare Minds PfgvÈded safe, specialis14nfrKm8d Sup tailored to these alItIeS. Young adults particularty explored identtty, Isolation. self-esteem and m8dicaJ anety - issues that are often under-reLxyJnised tsi rare disease populatlims. Feedback confinYts1rf84anging impact: °Absolutelylrfe changing...Thayh8va hada rn8se impact on myphys¢al8ndmental health.. "It gave me the Sup 8nd enc0urffjnt lo acknowledgo I bfds aNe to make chang8s...8nd speak to my tsmily and fvends èljout my Gonm. Th8Se Outcornes irKlicate iThJeased reience. rrnFffoved copiNJ strategies, greater confidence in cx)mmunitjn. and redd psychIogICal distress- all key iTrJicators of improved qualty of lrfe.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORTI {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Improvèd knovA•dg•. confidèrKÈ and sèlf4dvoGacy A¢ ID Blear. relevant InfLYrnati emp•[S better deur1makIrj and [8dLS 8nwty. We delwered: . 4 speda]ist infomtKJn eveniros (Enzyme ReFdawnent Therapy. gene therapy. research updates. physical wÈllb6ing) . A Monthly Fabry edatIon programme via WhatsApp (x)wing pain. w¢ynen's health, gastroinl&slinal issues, beneffts, scriptiro lor apIntments aNI self-adv(Katyy Regular updales on dinieAI trials. treatrnent acc arKI healtare nalgallon The impact of this was improvéd hèalth literacy. irueased Confiden in treatment decisions, stronger self- advoca¢y skills, susts1rd peer discUsSk and shared rning. members feeling better equipped to nwgale Gomplex systsms in the rare rfLsease. Support events Through¢wt 2025 we held a variety of fa¢t0-face supp(Yt events ft>r our families. tali ored to their Spear needs. This includes opportunltlÈs for affected thildren. young peopk and their parents to com¢ tog¢ther as wtrll as the bÈreav8d communlty to sharÈ mernes and eXper1erS. Our farnilies were unanirrKrtJs in expr8ssing the kx)&bvè impact of th&88 events and sharing SeS and experiences with other families. In Awil. families gatheTEd at Farytsle Farm: l)ne Ihe few days where VE Gan trnty rglax...such 8 safe spaco w178rn Oth8rparenfs reèlly und8rstand.- Jul$ P8ultons Park trip enabled access fc families who other¥e o)ukJn't attend.. Very grateful as we cotjldny afforf daytrips like this othenvise.. August at Yorkshire Wildlrfe Park offwed reconn&¥)n: Wonderfultsing atwe lo talk to someono who Is in same boat." S8Ptèmber's Week of Remembrarts and H(e at Thresby Hall an¢J tree planling was doscrfbed as % truly unique andprewus experien." November's adult get.twth6rfostèred understanding." December's Odds Farm Patk eventvrds simpty an"amazing... magKal day." IPS Matters 2025 We held a confen and family weekend in June for all familk% wilh MPS and lated o)ThJthns. Fuelled by the success of the Fabry Matters Conference in 2024 and wlh the CEO'S viwn that il needed to be w8lcomin9 and ralaxing firsL we madè this the best we could. Realty it was Ihe families themselves who made (t great. gling other fan711S end b&ing able fo se&%ions on which can help my son ancl help my understanding. Being able talk to thè éxpèrt5 wa$ also very helpfvl.. Parent 'Everythin9 vfds so thoughmultypul logeflw. and the 8norgy. Lv8aQW. and s&ns& ofcommunity w8 truly inswling. 11 was great to be invofved. and lin gratefiH tr the opsmvftinty to OnacI 8nd 1è8m ffom wonderful grorjp of people." Speaker "1st cofifemnce for me.") Spoke to npany new friends atwt &milar shuathM& Gof loads of info and felt likg l fln?lty bèlong somewhere"Comment from the feedback board We also held an Exp8rt M88ting thè same vekWKl, whith was d&81¥ibed as an exlIent and memorable day. valued not only frjr the diseAJSSK)n5 but aLw for the than lo rttonnect wth colleagues. the society and patients.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Clinlcal Ilalsons Throughout 2025, ¢linic41 li8i5th7 work focused on improvirKJ care pathwÈys for people ling wlth lysosoal diseases, slrenglh8ning national policy a1 dinical decision-makn"ng. and ensuring patient Bnd CAwwer voices remain8d cèntral to system chango. A Te tkne was ccdlabwation. bringing togèthw spÉti81ists, policymakefs. res8archÈts and families to drivg rnwaninglul prCr. Key achievgments included: MPS Altway Project IWI: S¢rAJf8d progress icAYard jrmnt fvnding arKf esiablishèd multKliscaptinary clinical groups. Ear, Nose. Throat (ENTI, respiratory. P88t1iatric 8rKI adult speThalists agrped a shared appro. wtth authorship teams and publication stnctures tnfir1j for major guidarKe papers - on8 of thè m05t wllaboratNe clinical initsatives in th¢ MPS fiekl. Em•rg•n¢y Alrway Passport Coordinated development wrth NHS EngLaThJ H•3hly SwiaJi5e¢J Services. ENT and 8na8slhetics teams to improve safety and u)rwtenLy in eMejar airway eare frcn 2026 omvarf. Newbom SeMÈnin9 Advocacy: Led 4 wor(linated response followng the UK Nal•)nal Screen1 Committee's ak evidence- wndusion on MLD screening. uniting clinicians, suentists arKI pab.ont oryanisations to challenge iauracIeS and amplrfy family voices across political and media chan[. National and Internatlonal Collaborallon". Convened the UK & Europe Biomark6r Mè&ting {Mth regulators induding the FDA, EMA and MHRAI. Igd the MPS Expèrt Meeting. supporte(J trdnsition pathway work, and rgpresented the ¢ommunlty intemat1onty. Strenned ttATrdb)ratTon wthin Ihe Ajpha M8nn05idosis communrty and lo pojw work through the ChildFMxxl Dernentia Action Gffwp. Cllnlcal Lead&rshlp- Chaired Ihe PatienL Profe5s•)nal and ParlnÈrshrp Ne1 {PPPN}. overseoiny twblicat*)n of 10 national dinical guldelines awss multiple LSD conditiC$. signrfunuy Imprr)ving cvnsislency of care across t UK. Two proj9¢ts We 5elec#ed f PfE5enlation at WORLD 2026. hhlIghng trt)Ih cofkborattVQ gUKlg1ine development and the Ient health pressures [ by families. OvÈrall, 2025 marked a year ot strengthened din pathway5, deeper cdlaboration and Sustained progress toward p8tient-centred change.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Cllnical S¢lentlfic Advisory Committee In 2025 our Clinical Scientific Adwsory Committe8 ICSAC} pa¥J tyjl £129.766 to grants and commtited a fijrther £100.C0 to luThJ future research. This year. invèstÈd in rèsearch that addresses uitical gaps in dn(sIs. tre8trrwt decisi-making and quallty of Ilfe f(w people IMNJ rare diseases. Novel hyperpo1arid 129X• MRI technique of inve5tigatlng Lower REspiratory Di¥gas0 in Adults with Mucopolysaccharido¥ls ILoReDAM study}- Dr Karollna Steplen This project ta¢kles one of the [rst Serics challenges in cdItionS such as MPS.. severe respiratory cornplicalions and hlgh mortality. Current tools fc( aSser lung heallh 3r8 limiiÈd. By ÈxploriThJ advanced imaging techniques, this mse8r¢h lays the groundwoth for betteT ufKlersfarKlI. rnonitoring and management of respiratory disease. In thè long term, it has the potenual to inforTn dinK31 IddineS. improve pati1 care and suppcxi the d8V8k)pment of future therapies. D8v•lopm•nt of a r•pld-turn¥round. hlghly sensltlve assay for anllrflrug antlbodles In MPS IV- Dr Tomas Baldwln Focuse(l on irnPTOViThJ treatmenE decisKJn-makw)g. this rÈsèarth aim5 lo devekjp better tools to Identify palents who may respo poorty to therapy at an earfier slage. By 5UFpyling more personali8 and targeted CAie. it seeks to improve outcomes for pallts and faThwlies while hetping heatth Systts use tr88tmènLq more eff8ctively and efficiently. C041•slgn physlcal actlvlty and sedentary haVIour Interyentlon for adults wlth mu¢opolysaccharidosis- Dr Dan Ballty This study exphjres how to bett8r supprMI 1)Èalthy frfestyle GharvJes for people with Ta conditltins. By identifying barriers and opportunities to irweas& phyy¢31 athty and redu s&Jentary behavmwr. rt aims tt> improve overall health and day-tAay quality of lrfe. The fnjirus couhj infom) pract1 gu*kncè 8nd tntuventiws for patients, caregivers and healthGare professionals. Togèth8r, thÈ$e projects drive meanlngful thange by tnaknng rrrfxe timety, perSOliSed and evh1er-baSed. Our investrnenl is shaping fvture guldellnes. i(x)Is arKJ interwbons thatwill have lasting impaGL R98earch •xco11on¢o We have bEgun the proc8ss ol joiniTrJ the Assoriabon ol Medul Researd) Charities IAMRCI, the gold standard for research governan and impact. Membership wl strh9n our ewdlIty, ènsurè besl practice in funding and repon. and expand our access to nalKJrral expgrtiS8 and (xAI8tAyaknon. En¢ouraglng Innovatlon Through our Don'S Den InitiaVe and Conferen FQSter presentations at MPS Matt8rs 2025. we provid1 researchers wth 8 p18tform to share new ideas and shovrtase inrnwdtK)n within the rare disease cwirnunity. Arya Ajay DIO Ajayakumar. wtnnw of first prEÈ for her pr¢wa IMlIg deteCOn methods and analysls of lycosaminoglycans lor Mueopolysactharidos15 patlenls uslng ToF4IMS, Is developing researth that supports faster. l¢ss invasivg and more acrEssible diagnS. EarfKr det8cb.on and improved monitoring redu¢ stress for families, support incjusion in nevthm sueening programmÈs and lay the foundation for mole P8rsonalised care worfdwide. By championing emerging resear¢hers and investir#J in htqh4mpact wqects. we continue to strèngthèn thè futur8 of raie dis8ase diagnosis, treatment and care.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORTI (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Operating effective process•s To carry oul our wclE W¢ rely on fundraising aThY d(x)8tions. The MPS Society receives no govemment fvnding and so we are allY gratsfvl to our suppKxters WIthrt vthose generosty we would not be able to cntInUe to provide our vital support to famli ies Iwing wtth Ihg chalw of MPS condit)ns. Fundralslng and donatjons hlghllghls Indlvldual donatlons W8 arè vèry gratèful to thjr suppt)rter5 continue lo donate to us regularfy. In 2025. we ed £22k from regular dollab.S and p8yfDII giving schernes. We also recaved over £24k from donations and tiibutes in memory of loved ones and over£160k in on&off écfflatty)n Appeals We were delighted to have been selecled for a BBC Lrfdine Appeal that aired on BBC One on 25th May. Thousands of people w8t¢hed (xjr 8ppeal which fgatured scffje of ujr amazing families at our Family Events and our Support tÈ8m, highligming the wlal work we do and helping to rae aWanesS of the MPS Sooety. We We thtilltrd to have raised over £23k from this appeal. Ev•b)ts and chall•ng•s We are pleasetl to have raised ovér £133k fmm thaenge evenls in 2026. Thi5 induded a fantastic year for the London Marathon whKh rdised £32 Chrfstrnas Campalgn The Big Give Christmas Challewe ratsed a stayJering £30k for our cxjmrnunty events in 2026. MPS Awarnn8ss Wtèk Our fuThJrai$ing target W8s smashed and rdised over £29k. This was germted frcrfn a varioty of events at schools, nur5ewies and speciali51 ntreS taking part in Wear il Blue. cake sales aThJ coflee momings. a pub quiz. a golf day. football presenlalon. a half marathon. some online fundraisèrs and donations from some very nd individuaL8 atvj companies.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Trusts and pharnuceutlcal We would like to gxtend our sincere thanks to c4Jr key supporters Ihi% year wtrK) granted funds towards our Sgfmces. pfoi8cts and atieS. indlIng the National Lottery Communty FurKI- RC ElarK1-WIde. charitable trusts. fcrfjndations and anall()rts who kirNJly gave donathX5 and grants in 2025 iaude Prolecl ive. the Sylvia Aitken Charitsble Tnjst. DavKI Lister Charitable Trust. the Blair Foundalion. Himat Tanna Charltable Trust. the Flarence Tum9r Trust. the Boshier-Hinton Fndatsn. The Amld Clark Crmnmunity Fund, The Reed Foundab"on, BnKe Wake CharFtable Trust, Chrisiopher and Ewth Thomas Charitsbfe Tr[ the Charfes and Elsie Syke$ Trust, Baddiley Consolidated Charities. Thè Evèson TrusL thè W8tter Guinness Charitsble Trust. Ttte Bally Thomas Charilabfe Fund, Simon GibsDn Chantsble Tr[L the Clover TrusL the Geoff and Fiona Squire Foundation. The W E Dunn Trust, Frazer Trust. the Annie Trdnrner Charitat4e Trust, Enkalon Foundation. FSJ Charities, the Zothnis CharitatAe TrusL Sisters of the Holy Cr055 CIO. ShareGrfI. the Mhaèj and Anna Charitable Tmst, th8 Strangward Tnjst, Jamés Wo(Kl Bequest Fund. Medi¢2sh FoundatK)n. the Ardwk Trust. the Bouttell Bequest, Oakdale Tnjst. James T Howai Charitable Trust. Ihe Carrington Chatitable Trust, Bowen Lodge Freemasons, The Hobson Charity. the Bobby & Steve Foundation. Enterprise Mobiftyi¥ the Constance Travi5 Charitable Trust. The Bart)our Foundation and the Bartle Faftmty CharitxblÈ Tn We were very grateful to receive finanaal contribubons duriryJ 2025 from th8 following ph8miaeAutical companlès towards varfous aspe(ts of our patient yjpport serwces and FKojects.. AXiOn. AMiS ThèrydpÈutits, Biomarin. Denali Therapeuti1, JCR Pharmaceuticals. Offjhard Therdpguti(s, REGENXBIO. sarfI and Takeda UK have pmwded Iwjding to MPS Scoety in support of 2025 patsenl projects but have had no inpul into content or output. Chiesi Limited has pmMd8d an unr8stridÈd finanrial granl to support the MPS soCs frondine patlent supwrt services In 2025. Chi&$i Limitgd has had no invofvement in the devek)pment. delivery. or operational aCtIveS of these semces. Chi&si FaCeutiii S.pA prowded fijnding to SUPF(Vt MPS So(a"oty's patient prcpcts during 2025,. however, they r• not involved in the devejopment. conterrt. (Y Qui1 oflhese ts.be5. Ullragenyx have provid8d unr8strlded fUrlg to MPS &xety in suppcKt of 2025 patient Projects. Our gfanls dwatKJns from charitable trusts and f1Jati(mS came to £333k, funds from pharmaoYutic81 ccmnpanigs caTllg 10 £2k and grants from other souriss e2mè to £71L gmng a totsl crf £694k from these sources. Staff devel¢)pmont and ¥uppwt Our staff arè ¢entral to our charity. and their kTh). skill$ and expgrtisg help Sha the fxganisalion lo be the bast it can be. Our annual survey helps us awss our perfrnal as an ernployer. and in 2025 we were pleased to maintain high sc>)res in key aas. We continue to Tnvest in our staff Ihrough upskilling and training optunIties, encouraging th)edg• sharing through bitesze trdining sessis. In 2025 we also invested £5,dKIO in external courses to rèlwsh s8fegusrding arKI gjpwi develOpnt For 8everdl yea¥s we have offered our staff a 2417 empkiytt 8ssistarKe progr*nme to support them through ditficult times. To further enhar Ihis. four team membets are trained Mental Health First ders. and one is a trained Grief FirstAider. Governaneè Trustèès meèt up to five times a year for fcwnwl boar(I rrwtings, wth a trustee attendiThJ a fvll staff rneeng aftei each lo share rdevant inforniation wlth the teams. In our 2025 staff surrfey. 90% of staff said they have confidence in the tM)ard to deliver our th8ritablè nyssion.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORn (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Fundralslng The MPS Soryety is registered with the Fundraising Regulaky and as such adheres lo their Code of Fundraising Prdctice. We promote our wistration thè regulator cn our materials and website and our Fundr4ising Promise is available on the websits. This [miSt clI1rS our commilmenl to dornrs and the pulSi¢ to uphold the high standards and best wactice expected of those charities iegistèred wth thè RegLJlatrJr. We do not have any agreements with extemal fundr8iyng ts)mp#n or mailing companies for the purposes of fundraising or marketiThJ. We do not Lwy mailiry lists for direct wrketing. nor do we pass on our support8rs' infomiation to third parties ex%pt in c1r(wmstanS SLKh as registerirg them for an 8xt8mal èvènt. which by definOn has thr expli¢it (x)n5enL All of our fvndraising ath.vity rr]anag8d by the Head of Fundraising & Communi¢atior6 tskes reS[bIlty for any issues arisiny fr(xn those vhv) are fundrai5iThJ on our behalf. As part of our General Data Protection R8gulalkin {GDPRI cornF4k7r we have ensured Ihat our approaches lo past supporters adhere to our Data Rètèntion and Privacy PoliGy and do nol approach anyone who would not reasonably expert lo hear fr7 u5 through pasl eroagement wrfh supwrt activity. Al communications will includè the oprtUnity to opl out as well as state tpthat fcffm ot(x)mmunKxtion is 8prrfopriatÈ. Flnanclal Tevlew The MPS Society o)ntinues to raise and recetve fund$ thrDtNJh app]rcalion5 to grdnt bodies to support its dvocacy serwce and chartlable events, indudiry the salarEs of the senior advocacy oifw and four advocacy officers. as well as speoal PTi4¢ds. The Society czntinues to rely throughout the year on its members ft1 supporters. efftjrts to raise in(vme by way of th)naS and fvjndraisng. Income derivad from Charitab sctivS Ibaing gr&nts. 8vènts and awareness) lotalled £880,315 in comparison to £751.S14 in 2024. RÈeÉipts from donations £237.675 tampared wth £242.514 in 2024. This ygar le9acig5 of £17,919 were received whereas £1,039 of legacies were received in 2024. MPS Cornmerc4al Limited (trading as Rarè Disèase Re5earth Parlners) is a wholly e tradlng subsldlary of the MPS Siety. Al10915tiL¥l rvIc8S rg18t8d to PatientAccess to ainical Trials and work involving Health Technology Assessments and Palient Reportwj ChJtcDmes we carried Jt by MPS Commercial. In 2025, MPS Cornmercial were able to donate £15fj,681 12024.. £150.539) to the MPS Soo8ty. RDRP rètsins opèratr>nal independen¢e from the charity with its CY•vn Board and CEO. TransactIor arg undgrtaken Yrith third parts on a stridy o)mmercial basis and kèpt wholly separate to dealings vllth cha¥ity. Potential or actual arising are regularfy reled and activ81y rnanaged in line with the group's CA)nfl1 of inlefe51 lLy. Total group in¢omg lor the yaar ending 31 December 2025 was £2,184.220 (2Q24: £1.934.7351 wmpared with totsl expenditure of £2.152.485 12024.. £1.862,0721 and nei gains on the revalLJ8tion of prwerty and disposal of investsnents of £27,913 resulting in a surplus of£59.64812024.. df1t £72,663). The trustees work dosely th the Senror Le8dethip Team to ensure full cost recovery in all areas of rk. RÈsÈrvÈs pollcy In the year, ending 31 December 2025 the trustees miévtsd tha el*rTV$ reserves to ensure that it is flexible erK)ugh to withstand Ihe hhS and lows of funding, and rthst in its abilty to secure Ihe future of our services. In doing so, the trustees agreed to the estsbOshed pdw vthereby the unrest[ted fijnds not ttjmmitted or invèsted in tangible fixed assets Ilhe free re5erves'l hdd by the charity StskI be six months of th8 unr8strietÉd resources. In accord8ncé with good practKe, this is reviewed eath year to ensu that rt farly tyflgcts thè needs of the So¢iety. Th8 r&vl8w in the Current year concluded Ihat 1he rren1 p1Y of aiwllng for reserves of six monlhs of the unrestricted resources remains approate. Cutrenl year our six months oye expenditu equates lo £632.753 12024.. £635.883}. Th8 l•vel of frè8 reserves as al 31 DeCernb 2025 amounted to £740,781 12024.. £743.1021 whlch amounts lo 7 mnths tsf overall exFeThXrture of the Soa"ety. Plans for futur• p•rlod$ Our focus in 2026 is lo dellver seM(t$ to support the mental heallh wellbein9 of individuals and families continue providing thè resour$ that have already proved useful. We wll anafyse the resums of our latest survey on supporting siblings tts tltsr tur SUPKX)rt to fil their needs. We will reviewing our bereavemenl service and resourGes and wll continue ourwork aTrJ supprt trj young peop4e thr[)Jh our'Rare Voices, group.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEhlBER 2025 Structure. governance and MaaMe1)I Thè So¢iety is ¢trOlled by its wveming dooJrrEnL the MenradUm and Arbdes ofASSlatt0n. constitutes company, Mited by guarantee, as defined by the Companies Ad 2006. The Society was founded in 1W2 arKI was registÈrÈd with the Charity Cornmis5KJn in 1983 as an unincorporated asso¢iaticm. r99istsr9d Charity number 287034. On 2 August 2011 Ihe Soc4ety incorporated as a company limited by guar8nlee wlh the narne 'Swety for Muc8pc4ysac£harhJe Diseases.. The assets. liabilities and activities of the Soriety were transferred into this dritable company on 1 November 2011. The trustees. who are a150 the ert0 forthB purpose of c£rfnpany law. and who seryed during the year and up to the date of signature of the financial slatewEnts weTe: Katy Brown Sarah Burgess Judith Evans Professor Simon Heales Professor DeY Hughes D M Patton Phillip Pearson Wlma Robins Fiona Stebwdrt Dr G McK99 Prof B G Winchester Rècrnitment and appolnknent of new trustees New trustees are elected by the director and typirAlly hold office forslx years. Organisatlonal structure The Society is govemed by a Board of up to 13 trustees known as the Board of dIred0 whh meets a minimum of five tirnes during the year. The day to day busine55 01 the &Kiety is manageil by the CEO and is govemed by the Articles of Associ8ti0n. Wld?r network One trustee's first language 15 Welsh and others fNe in S¢))Iland and Northem Ireland. GeographIly. the MPS Swiety provides a UK wide gJpp)rt aTrJ indmdual advoca¢y seM¢8 from MPS HOU basgd in Amersh8m In BLtckinghamshlie. Our employees ale wrtral to provwjirtg the supyxt. iThJivNJual advocw seNces arKI thg commun10 of our rAuse, while OUT 5UPFK)rter5 enable us to achieve our goals and objective5. Rlsk management The trustees have hlentified the levd of risks to wthich the Socièty may èxposed 8nd have establlshed thè implementatK)n of a risk management strategy whith ¢orryNises quarterfy revtews of the risks the SocAety rnay f8¢e, systems and pro¢8dur8s to mitigatè thesè and implementstKbn of prodUreS designed lo report on and minimi59 any potenti impad the sc slKyJld any oflhese risks materialise. To strengthen govemance the Boare has estsblished Suwommittees. Ihal a ¢halrod by Irustegs vAlh pemianent repSentiOn fr¢)m memb¢rs of execulive.As detsled b8lovr. Rlsk SUComMIttee In 2022 a Risk sUmIttee vtas forny established. vAlh dear tem of referen and guiding prfnciples. Identrfying besl practice from th8 Chanty C(xnmtssK)n and the expert knedge of sele¢ttyJ trustees, a new stnctur8 and proc was created. T(xlay, the sety berts from a formalised arKI 5tnJcture(I iisk managemènt prot using insights from thÉ bts8rd expert opiniorts frcn Ihe senior staff leadership team. The risk matrix is refre5he(l on a monthly bass and shared and discussed at each board meetst. The new risk management matrix allows for the simple mprehenSI)n cf liv& risks. the arethivè Of old and &nabl8s re)rti 8ligftèd to our strat8giC goals. -10-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES. REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2Q25 Audlt and Finance Sub<ommlttee The Audit and Finance Committee uThJertake a range of duliès to supwrt th8 ExÉthliv8 snd thÈ Board to underst8nd the overall financaal position of the organisabw. de81 effeclwety and woactively with key financial risks and provide the necessary assurances to key Stske1Kder5. This wcwk indudes bul is not limited to, undertaking a detailed review of the in-year fin8nclal pOs[t and suwhng the management ol key risks and opwrtunities, overseeing the effectivenèss of thè 8nnU budgeting process to ensure resources are ajigned ¢ffeGtivEIy, overseeiny the production of the annual reFA)rt and assooated JUdgents. reviewng and approwng key financial polieS. oVeeelllg the effectiveness of Ihe inlwn81 Intr enrunment and ensuring that appropriate audit arrdngements are in F4ace and discharg8d suffiuÈndy. The Cornmittee is chalre(I by a trustee and always has al least one other trustee as a pgmanent mèmb8r. in addition to the Grwp Chief ExeGulive and Head of Finan. The C¢Mitt0 m¢et 5 brnes p9r ye8r and reports on progr and matters for attention at each fvll Board rting. Clinical and Scienlific Advlsory Sub£ammittèe ICSACI The aim of the CSAC Committ88 is to ansurÈ that the VCeS of the patienl communlty. the dinical community and the scientific ¢wnmunty a invofved in the consKknlion of research. The main funcbon are: To consider the importance, scientific mgrit arKI potsnlial impact of research grant applications made to the MPS Society. When approp31¢. extomal peer revivw of research grant applutions will be sought. To provide a recommend8b.on to the MPS Board of Tnjstees on the knnding of research grant applications mad& tr) the MPS Soaèty. CSAC may also m8k8 the MPS Bcord of Trustees aware of p)tentlal futu areas of researth for supp( Advise the Board on polentsal CSAC mombws. Act cdlectivdy or individually as scyJrc4 of advts io MPS ScA?ety on dintil orntifiC research. The Board of Trustees VAII aprx)inl a Chair of CSAC who wll te a rrrnber of the main MPS Board ofTruslees. The subcommittèè will appoint 3 ce-ChaIr from the memtwslip of CSAC. Ea¢h member wll be apwinted for a lerni of 3 years and néw mèmbers rnay be appointed at any time. Induction and tralnlng of nwtrusteès New trustees ar8 provided with infcmiation 8t#yJt the Souety and ts work, the role and responsibllibes of trustees, and the ¢omposilion aEKI workings of the Board. Th8y ate gwen uJpies of thè Sociètys goveming Instrument. 8 folder of all the SocieV5 poIKie5 and the rninutes of th8 last fvè Board of tmste8s mèètings. TrtJstÈes 8r8 rÈgulady pded Yrith the latest lnf0rrnatn on emOynnI and ¢harity Lqw. Pay pollcy for key management personnel The Board of trustees arè respoble fly definiThJ the Sclety's pay pcdry and setbng tr* annual salary for th¢ Chi&f Executive. Auditor In accordance with the company's arlicle5, a resolution that Xeinadin Audit Limibj be reapwinted as auditor ol the company be put al a General Meeting. 11
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES TRUSTEES, REPORT (INCLUDING DIRECTORS. REPORT) (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 DlselOsu ol Infomution to auditor Each of the trustees has wnfirrned that there is no Inf0rrn of whith they are aware whith is relevant to the 8udrf(, but of whi(* the auditor is unaware. They have fvrther confirmed that they have taken appropriate steps to identify such rdevant infomath)n and to eSta(Sh Ihat the audtlor is a¥r of SLKh irrformation. The trustees. port was approved by Board of Twstees. Judith Evans Trustee 27 Jun¢ 2026 12-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES STATEMENT OF TRUSTEES. RESPONSIBILITIES FOR THE YEAR ENDED 31 DECEMBER 2025 The trusteès. who arè also thè diredors of Society for Mucopolysaccharide Diseases for the purpose of company law, arè rèsponsiblè for preparing the Truslees. Report and the finanaal statemenis in accordan wth applicable law and United Kingdom Actxwnting Standards (United knngth)m Generalty Accepted Accounting Practicè). Company law qUIS the trustees to prepare financial staternents for each finanaal year which give a true and fair ew ol the stste of 8ff8irs of the charity and of the incoming resources and application of resources, including the income and expenditure, of the charilable company for that year. In preparing these finanaa1 statements. the trustees are required Eo.. - select suitable accounting lI1eS and then apply them consistenty.. - observè the rnelhod5 and principles in the Charities SORP.. rnake judgements and estimates that are reasonable and pAent.. state whether applicable UK Accounting Standards have b8en followe(l. subject to any material departures disclosed and explained in the finan031 statèrnents., and prepare thè financial statements on the going concem basis unless it is inappropriate to presume that the charity will Continue in optrr81ion. The tnjslees are responsible for keepirKJ ad8qUatè aox)unting reuxd5 Ihal ¢Jt5dose vthh reasonable 8caJracy at any time the financial position of the chartty and enable Ihem to ensure that the financjal statements comply with the Companies Act 2006. the Charities and Tnjslee Investment IS(oitandl Act 20D5 and the Charities Accounts IScoU8ndl Regulations 2006. They are also responsible for safeguarding the assets of the charity and hence for tsknng reasonable steps for the preventbon and deLeCn offraud and other irregularib"es. 13-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDrroR'S REPORT TO THE MEMBERS OF SOCIEfY FOR MUCOPOLYSACCHARIDE DISEASES Oplnlon We h8ve audited thè finandal ststements of Sc(iety for Mucopotysaccharide Diseases (the 'charity'l and iys subsKllary for thè yè81 Ènded 31 Dernber 2025 which comprlse c(msolidated statement of finanoal activities, the consolidated aTrJ charity balaTh2 sheel . tho consdldated statement of CAsh fk)w$ 8t [te$ to the financial 8talements. including sgnificant accountir¥J Oi(xs. Thè financial rÈportirtg framework that has been applied in their prepaiation is applicabl¢ law and Uniteil lfjngyom Acthwrrting Stsndards, indudiro Financial Reporbng Standard 102 The R¢por&ng Standard applKable in the UK and Republic of Iland IUt)ited Kingdom GeneraltyAccepled Acwunting Fra&11. In our opinion. the ffinand stalements.. give a true arid fair view of the statè of the charttablè ts)mpany's affairs as at 31 December 2025 and of its inca)ming resources and application of re(Ce$, irtJuditsJ rts irwme and expendiiure, for the year then ended., have been propety pr8parwJ in with United lfjrydorn Generdlty Accepted AcLnting Practice,. and have been prepared in accordan wlh Ihe reqUIrets of the Companies Act 2CQ6, the Chartties arwj Tnjstee Inveslment {ScoUatNII Ad 2005 and regukgts 8 of the Chariiies Accounts IS0)Uandl Regulations 2[6. Ba$1$ for opinlon We ¢dUcted wr audit in acxijrdance th Intemational Stsndards Auditing IUKI {ISAs (UK)) and appli¢abl¢ law. Our responsbilrttes under tF¥)se slandards are further dwibed in Auditorfs rgsponwtslthss for fhg audit of the financial stalements section of our rep(xl. We a irKkFxndenl of the Bharity in acrdanCe With the ethical U1ments that Bre relevant to our audit of financial statements in Ihe UK. including the FRC'S Ethical standard. and w8 h8v8 fulfill our othèr èthittql rèspowbilities in accordance th these requirements. We believe that t audil evKlen¢e we h8VO (third ig suffKient and appwriale to F¥ovide a basi8 for our opinn. Concluslons relating to going In auditing tte ffinanryal Statements, we have conduded Ihat the trust¢es' u of the gpirvJ wn¢em basis of accounting in the pparatIOn ofthe firnCial stat&n8nts is appropriatè. Based on the work we havo perfomigd. we have nol Klenlified any rnalerial urscert8inlie5 relating lo events or Conditic that, indwidualty or co118Ctivety. may cast significant doubt on the charitys ability to continue as a going coneem ts a period of al tht twelve InthS from vthen ihe finanaal stalements are authorised for issue. Our responsibilities and the resp$1eS of the tru4ges with wpsppGt lo going GOnM are described in Ihg relevant sections of this reF Othèr Information The other inf¢)Thll8lion compiises the Informatic Iuded in the annual repcwt other than the financial ststemerts 8nd our auditorfs report Ihereon. The tnjstees a responsible for the othei informafK&n containèd wthin the annual report. Our ownion on the firwncial statements dces wK)l ¢J)ver the ottr inforrn8lion and. exc8Pt to extent othermse explicitly staled in our report. we dD rK)l express any lo of assuran (x)ndusion Ihereon. Our r8sponsibility Is to read the other infom8tion and. in doing so. cowder whether the other infornation is rnalerially inconsist8nt wth thè financi statÈrnenl3 or our kncWlge obtained in the course of the audlt, or otheThwse appears lo be MaterilY misstated. If we identrfy such material inconsiqtendes (x app3nt materfal misstÈtements. we are required lo deterrnine whether this gives rise to a material mi&8tatèmant in thè finandal statèmÈnts thèmsèlvès. If. based on the work we have perfomied, wè eondtmk that th*È is ¥ rrthri misstatement of this other tnfrirmation, we a requirod to rgwt that fact. We hav& nothing to report in this regard. 14-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDrroR'S REPORT (CONTINUED) TO THE MEMBERS OF SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES Opinlons on othèr mattèrs prescrfbèd by thè Comp#nlÈs Aet 21106 In our opinion. on the work utKlertaken in tt c(NJe ofouraud th8 Infc>m)ation given in the tnjstees. report for th8 finanual year for whith Ihe finanThal slalemenls are pr8parÈd. which inchJd&s thè diiéctr)rs' r8FKxI pr8par•J for th• purposes of company law, t5 consislenl with the finan¢i81 st8ternenls'. and the diiectots, port included vAthin tntstees, reFQrt has b8en Fyepared in xfordance wth applicable legal requirements. Matters on whlch we aro requlrod to rnport by exwilon In the light of the knovAedge and undetand1r of the charity aThJ its environment obtsine(I In the course of the audit, we have not entifIed material misstaternents in the direclors. repNt include(I wthin the trustèès. report We have nothing to report in respect of the follng matter5 in retavon to ¥h)h thè compan Act 26 and the ChariliesAccounts IS0)land) Regulath)n5 2006 require LLS lo repcrt to you ff, In our opinKJn". adequate and proper accounliry re{X)lS have Th)t been kepL OT adequale for our audit have not been recVe from branches not wsited by us: or the financial slxtÈmÈnts aré not in 8grè8mènt with thg 8emJnting rec¥)rds and relums" or certain disth5ures oftrustees, remuneralon spe(Jfiei1 by L4w are not m&Je: or we hav8 not rèceived all the infcthn and explanal)rts we requwe for audit.. or the tNstees were Th)t entitled to prepare the finanaal ststernents in aCwrdare yth the small companies reglme and take advantage of the small companies. exempliorts in preparing the trustees, ftport and fr¢)m th requlremènt to prèpare a strategic report. Responslbllltl•s of trusltss As explained tllore fuly in the ststemenl of trustees. resrM)nSitx"les. the trustees. who are also the directors tsf tha charity for the purpK>se of cunpany Iw, are rew)n&ble tr the preparation ol thè financial stai8ments and for being satisfied thal Ihey give a true and tsir ew, for such irtsm81 ¢>tr as thè tmst8ès dètemiine is ne$sary lo enable the preparatn of finanual staternents ihal are free frNn material mis51atemenl, wh8ther due to fraLtd or error. In pr8p3ring the finanoal ststements, the trustees are responsible for assessing the Chari$ ability lo continu8 as 8 going concem. disdosing. as applicable, mattets lated to goiThJ concern and using the go1ng concern basis ol aC(x)ti Unle the trustegs eithet intend to uidate the charitable company or to cÈasa operations, or have no realistic alternative bul lo do 50. Audiloe5 responsibilities for the audll of the finandal statements We have been appointed as auditor under Sect 44(1Mc) of the Chaiitses an¢J Trust8e Inv8slm¢nl Iscotland) Act 2005 and undèr the Conwanies Act 2(lJ6 and pCrft in acCar with Ihe Acts and revant regulations mada or having effect Ihpreunder. Our obiectNes are lo obtain reaSonae assurance aboul whetherthe fin8ncial ststements 8$ a whole aro free from rllaterial misststement, whether due to fraud or error. aThJ to issue an auditorfs report that includés our opinion. Reasonable assurarKe ts a high level of assurnnce but Is nol a guarantee that an audit conducted in 8CCx)anCe with Islis {UKI wll alway5 dele¢t a material misstatemÈnl vA)en Tt exists. Mi&8taternents can arise from fraud or error and are considered rnateri rf. IrKIldu8Y or in thè aggrÈgatÈ, thÈy enuld r8asonat4y ba gxpected to influer the eCIOMiC deasIcS ol user5 laken on Ihe basis of t ffinanryal 5taternents. The extènl to which Our prOPduS 8re ¢ap8bl& of det8ding irr8gularibes. induding fraud. is detailed below. 15
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES INDEPENDENT AUDITOR'S REPORT (CONTINUED) TO THE MEMBERS OF socIErY FOR MUCOPOLYSACCHARIDE DISEASES Enquiries ol man8ment 8nd tharged govemance We hekj in order to idenb.fy any 18ws an regulations that could Èxpècted to have a material impacl on Ihe finan(aal staternents. Throughout the audit. the Iarn were updated the oulcomes of these ewuirles indu(fjng Gonsiderdn as to where and how fraud rnay occur in the ch8vitsble ccrfnpany and th8 gNAJp. No instsnces of material no1comPlIn were Yentified. althwgh the prospèct of dètÈcting Irregularibès, including fmud, is inherentty difficult. This is due lo., diffi(JJlty in det8ctirKJ irreguLqrities: limits im)$ed by the effectivene55 of thè enb"W5 controls; arvj the nature. tiffliThJ and extent ofthe audit pr¢edu5 performed. Irregularities as a resuli of fraud are inh rnore diffjojlt to det ttn those ihat regjlttng from 8Tror. Spite the audit has being plann8d and rf0M* in acrL¥dance wrth ISAS {UKI. there ts an unavoidabl8 risk th81 material misstatements may not bo detected. A further desc¥iption of our responsbi ifiti8s is Ihe Financlal Reporting cncirS website at.. https".11 vhvw.frc.org.uklauditorsrespongbilities. This d&scriptK)n forms part of our auditorfs rep(Mt. Use of our report This rewrt is made solety to the chathabl¢ compan5 as a bc¥Jy. in aco)rdance with Chapter 3 of Part 16 of the Companies Act 2006. and to the tharitaue wmpany's trusiees. as a body. in actordance with Regulation 10 of the Charities Accounts IScotl8ndl Regulab'ons 2(. Our autht work has undertaken that we might sts to charitable companys members and trustees t matters we are required to 5ts1e lo them in an auditor's port and for no other purpose. To the fijlkst exlenl pemiltted by law, we do I1 a¢pt or assume responsibility to anygne other than the charitable company. the eharit8bl6 cx)mpangs member5 as a body and the charitable ompany'8 trustees as a body. for our audii forthts rewL or for the opinions we have formd. HèlÈn Furfong FCCA (Senlor StatutoryAudilw) For and on behaW of Xeinadtn ALKlit Limited. slabJWAjIt0r Chartered Accountants 46 Hamilton Squa Birk8nhead Wirral Merseyside CH415AR 27 June 2026 16-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF FINANCIALACTNMES INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 DECEMBER 2025 Unrestrlcled Restrlcted funds funds 202S Total unTthd R•strict•d funds funds 2024 2024 Total 2025 2024 Not•s Income from: Donations and legacies harit8blè attti¥itiès Advo¢acy support Psychc4ogical support Farnily support and special events 247.709 255,594 243.553 243,553 261.332 618.983 880.315 286,727 425,665 15.(KK) 712.392 15.000 20.400 24.112 24.112 Other trading 8cb¥itiès InY¢stmEnts 934,475 934.475 93.436 864,051 75,627 864,051 75.627 Total Income 1,536,952 647268 2.184,220 1.469,95B 464.TT7 1,934.735 Expenditurè on- Raisin funds Fundraising and publicity Cornmercial trajing activity 176.176 176,176 170,260 170,260 507.722 507.722 456,391 456,391 683.898 683,898 626.651 626,651 Charftable activities Advocacy services & member events Awareness raising Tr8ding actiwtigS- Patients support Rèsearth grants 170.459 161,478 636.889 807.348 161.478 244,$68 176.451 502.002 746,570 176,451 249.671 144.071 249.671 250.090 230,466 81.934 230,466 81,934 I[.019 YO eharitabl• èxpenditurè 725.679 742.908 1.468.587 733.419 502.002 1,235,421 Total expendlturè 1.409,577 742,g)8 2,152.485 1,360,070 502.002 1.862,072 17-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF FINANCIAL ACTIVITIES (CONTINUED) INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 DECEMBER 2025 Un1¢ ReStrk Total Unreslricted Restricted fund¥ lunds funds funds 2025 2025 2024 2024 Total 2025 2024 Net 9aingJllossesl on investrnen15 15 I2.4) 12.41X)I N8t Incomellgxp8ndlturè) 124.975 {95,640) 29,335 109.888 (37.225) 72.683 Other re¢ognlsed galn5 and losses: Rèvaluation of tsngibte rixÈd assÈts 30,313 30.313 Net movèment In Jnds 12 155,288 195.640) 59.648 109.888 137,2251 72.663 Reconcillation of fvnds: Fund balance3 al 1 January 2025 2.253.f>93 184.920 2,418.613 2.143.805 202,145 2.345,950 FLtnd balaneès at 31 December 2025 2.408.981 69.280 2.478.261 2,253,693 164,920 2,418,613 The ststement offinanoal actthties indudes dl gains awKI kjsses Tgu)gnised in the year. AJI income and expenditure derive from conlnuing activities. 18-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED BALANCE SHEET ASAT31 DECEMBER 2025 2025 2024 Flxed assets Tangible assets Investment property Investments 18 19 759,222 2,C() 1.149.238 976.585 859.525 2.158.460 1,836,110 Currertt Jssets Debtot5 Cash at bank and in hand 318.477 79).861 337,461 1.183,776 1.109.338 1.521,237 Crèditors: amounts falllng dug wlthln onè year (T89,5371 1938.7341 Net currènt assets 319.801 582.503 Total as58ts IS current1Sabllttl•s 2.478,261 2,418.613 The fund5 of the charity Restricted income funds Unrèstricted funds 69.280 2.408.981 164,920 2,253,693 25 2.478.261 2.418,613 Th8 financial stathents were approved by Ihe trustees on 27 Junè 2026 Judith Evan5 Truste& Company registr8tion number 07T2e882 (England and Iwos) 19-
SOCIEfY FOR MUCOPOLYSACCHARIDE DISEASES CHARITABLE COMPANY BALANCE SHEET AS AT31 DECEMBER 2025 2025 2024 Fixed 45s8ts Taroible assets Investment propety Investments 757.231 2.[x)0 1,149.240 973,851 19 20 859,527 2.1.471 1,833,378 Current assets Debtors Cash at bank and in hand 291.368 258.506 268.959 546,001 549.874 834,960 Cr8dltors'. amounts falllng duo wlthln one ygar 1228.084) 1249,7251 Net current assets 321.7 585,235 Totsl ¥s¥gts 1¢$5 current Ilabiliti•s 2.478.261 2,418,613 The fvnds of the charlty RestsictÈd Income funds Unr¢strid¢d fun¢Js 26 25 69.280 2.408,981 164,920 2,253.693 2.478.261 2,418,613 The finan¢i01 statements were approved by the twslees on 27 JurE 2026 Ju Evans Trustse Company registration numb 07726882 IEThJland and Wakn) -20-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2025 A¢¢ountlTVJ pollcles Charlty Infom)atlon Society for Mucopowcchartde Diseases ts a private ¢>Jmpany lirnited ty guarantee irKorporated in England and Wa18s. Th8 registerèd office rs MPS House. Repton Pla. White LI Road. Amersham. Buckinghamshiw. HP7 9LP. 1.1 Basls of preparatiofr ThÈ financtal statements have been prepared in aCrdan(¥ wth Ihè ¢h#riVs govemiThJ document, the Companies Act 2006. the charits arKI Ttustee Investrnenl {Scx)Ilandl Act 2L105, the Charities Accounts {Scollandl RogulatiorK8 2006. FRS 102 Vhe FinarKaal RepNling Standard apFl1ca& in tha UK and Republic of Ireland. and thé Charfles SORP "Accntrj and Reporting by Charitie5.' Stslgmgrrt of RmMnded Practice applic8bl& to charities prepariro thew accounts in accordance wilh the Financial ReFK)rting Standard applible in the UK and ReputAic of Ir•Land IFRS 1021.. The charity is a PublK Benefit Entity as defined by FRS 102. The finan¢lal ststp¥llewrts are prepared in sterfing. which i8 thè function uJrr8ncy of the ¢hartty. Mon8t8ry amounts In these financial statements are roundoj to the nea1 £. The financial statements have been prepared urnler the historical CA)sl o)nvention. modifi8d to the revaluation of certain financial Instrurnents aThJ propErties at fair value. Ttr principal accounting poli¢i¢s adopted arè sat out below. 1.2 Golng concem Th8 tnJsteÈs h8ve considered the fiJbJ tradiThJ of the charitsble o)mpany arKI group and have prepared eash fltsw forec85ts for a pernd of 12 rrthths from Ihe dats 9fthe financial Statements. Al the time of approwng the finandal ststements, the Inj5t have a reasonable expectallon that the charitable company and group has adèqLJatè resources to continue in Drat)nal exlstence for the foreseeable future. Thus th8 trustees eontinue to adopt the gjing c(cern ba%ls of a(mJnting in preparfng th8 finanual ststements. 1.3 Charttablg fund The fin8ncial statèmènts distirwish between restricted and unrestrictsd fvrKls. Th& form&r Is received from donors arKI is sublect to restricticS on the purposes for whth they may bg used. Unr8stricte(I fur5 are thosg wherg there are no extemally imposed restrictions. They indu(k those fund5 freely availat4e to the charity for expenditure or appropriation to r8swv8s for intemally designated purposes, such as research programmes. Designated lunds compris8 funds which havè bÈÈn set de at the discretion of the trustees for speufic purposes. Th? putposes 8nd uses of the designated fijnds are set out in the rKites to the financial statements. 1.4 Incom• Inc4Jme is c[Yanised is legalty entitkni to it after any perfomance conditions havè been m8t. th8 amounts measured reliaw, and li is probatAe that inMe be rg¢9ivgd. Cash donations are recognised receipt. Other dcfflattons are reco9nisèd orta thè eharity has bè8n notifièd of donation, unless perfornance conditw)ns wuir¢ deferral of the amunl. Inccme tsx reojverable In relatn to donatH)ns reiVed under GIftAk1 ordeeds of (x)Yen8nt is rewgnised at the time of the donation. Legacies are COgnised on re¢typt or olhervit if the charity has been Trjtified ol an impending distribution, the amount Is known. and recxipl is expected. If the amount is not kt). th8 legacy is tr8at8d 8s a contingent 8S5eL 21
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 A¢¢ountlng poll¢l8s {Conttnu•d) Insome Is ststed after trdde discounts and other sales tsxes. Voluntary Incom• Voluntary inrne. is by way of reththd arnl unrestn"Ltsd donations. grfts. legacies and peryaj fvnd raising events, 15 induded in the statemeth of finanLial athitvds in full 8s s¢xM] a8 it is r[ved. Grants recelvable Grants are recogni8ed when th8 charity has 8ntitl8ment to the funds. any p8rfom)anc• conditions attached lo th8 items of [r0m& have been met. it Is prob8ble that th8 Inthmè wlll b8 r8cslv8d and the amount can be measured relobly. Legacies Legacy income is recognised wn it is rtain to te 1Ved and can be measured th sufficient reliability. Donations in kind The MPS Society appreciatès the level of actsve 5lljpJrt it rec£$ from VUnteerS gNd a conslderable amount of time suppng our objectNes. fund raising and administering our acbvities. WithDUt thls voluntary SUppct Ihe MPS Soaety would incur o)nsiderabbe additional expertse. It i8 not considere(S pracbcable for the purposes of these finanaal staiements to put a monelary value on this suPL the trustees can but offer their heartfelt &Yatitude to all its volunteers supporters. Gffts and int2ngible income that can be quantified are ni%d in tho statemetrt vf finanTral aLvittgS. InVtrnent income Investment incorne comwises gilL bvki lirvJ soaety and tenk interest reab. This B included in thÈ incomè and expenditure aCcUnt in the year in which it is received. Incom• from oth•r tradlng actfvltl•s This irwme is frorn the Ir3ding subsidiary MPS C(Mnm8r(x81 Lirrut8d. Th (¥ynpri8es patient management fees and survey resear(. In(x)me is recLunised al Ihe fair Value of the wn5iderdtion received or rE¢eivable for goods and Servi prowded in the normal course of lneSS. 1.5 Expenditsre EXrndItUr is #IUnted for on an basis and has been eJassifi&l under hèadings that aggrat• all rJ)sl related to the Calry. Where cosls Cant be directly attributed to particular headings they have boen aOCated lo activities on a basis consistent wth Ihe Ltse of resources. Grnnls payable are in the stat8menl of finanThal In tho year in which thoy late. Grdnts offered subject to CondinS vthKh have Tr)t been mel at the yearend dale are noted as a commitment but nol acced as expenditure. Support costs are those functions that assi Ihe %)rk of the charity but do nol directly undertake charilable acdvities. Support cosls indudg Head Office rosts. finarKe, personnd. payull and govemance costs. Govemance wsts are th[ incurred in GneCtion a(JministratK)n of the tharity arKI compliance with constitutional and slatutory requIrents. These are apwxtioned based on staff number5. Pass4hrough costs and r•lmburs•monts ClinÉr41 trial expenditure r9itniwr59wnewts aTP llQt indud8(J rn Ihg finanryal ststgmgnts. ExpenditUTe is incurred by MPS cOmmeral on beha of patients partipab.g in dinical trials with wsts beirKJ reirnbursed by Ihe arMaCeUtICal 0)Mpan5. MPS Cornnwial Limited acts as an agent on behalf of tl pharrnaceutical companies (under guJance of FRS 102 secion 23.4). 1.6 Tangible fixed assets Tangible fixed assets are inil'ally raJ[l at cost and subsequenlly measured at cost or valuatton, nel of depreaation and any impairn18nt kjsses.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Accountlng potlcles (ContSnugdl Deprecialijn is recognised so as to write off cost or valuation of assets less their residuol values over their useful lives the following bases: Fre¢hd laThJ and il1jS Comwers and equipment StraKJM line over 50 yoars StraKJht line over years The gain or k)ss arising on the dispw] ol an asset ts detemiined as the dIfferer betsyeen the sale proceeds 8nd tha Carng vue of the asset. and is rpiwni58d In thè st8tèmÈnt of financl41 acti$$. 1.7 Investmènt property Investment propety. which is prorwty hakl to eam r8ntais andlor for pital appreciation. is initially recogni$8d at cc6L indudes the pur¢h8se o)st aThJ any directty atln"Ixrtablg gXknditure. Subsequently it is measur1 81 fair value al the rBPOrting end ijate. The surplus or d8fiLit on revaluat is recogni3¢d in profft or ioss. 1.8 Flxed asset Investments A Subdiary is an entity contrdled by Ihe tharity. Investments in subsidiaries are valued at ojsl less provision for impairment. Investment assets arising Yaluables awc indUdj at market val. These assets are valued al open market ¥alue at date Of1knatTr atKI sub%quBntty reVaId to open rnarkel value 3$ apprwlate. FtxÈd asset inveStnS in tK)nds are inibalty rraSured at transaciion price exduding transaCtn ts)sts, and are subsequentty rneasured al fair value at each repM)rirrfJ date. ChaThJes in fair va are recc•Jnised in nel incom8118XP8nditurel for thé year. Transact costs ar8 8xp8ns8d as incyJrTed. 1.9 Impalrnient offlx•d assets Al eath repting end date. the tharity reviv#s the ca7rj arnounts of its langible assets to deleminè whether there is any inditiOn that tlse assels have sjfflered an impairment Ic6s. If any such indication exists. the recoverable amunt of the asset ts esthnated in order to determine the extent of the impaiment loss Ikr any). 1.10 Cash and equivHlents Cash and cash 8quivalènts ine]ude (x%h in hand. d8Wts hèld at (211 wth banks. othèr short-lerni liquid investments with ginal maturilies of three months or18ss, ar¥J bank overdrdfts. Bank overdrafts aTE shown thin LrrOwIngS in c4Jrrenl liabililie5. 1.11 Flnancial Instruments The charity has 818ct8d to appty the provi&cms crf Sethon 11 'Basic Financial Instnjmgnts. aTrJ Section 12 'Other Financial Instrumènts l&gLJeS' ol FRS 102 to 811 of its finanual instnJman&. Financial instruments are recDJnised in the charivs balan sheet when the c*arity become5 party lo the contractual provisions of the lrtstrUt. Flnancipl a55ets arKI liabilities arB offseL with thg r( amounts presented in the financial 51alements. when there is a legally enforceable rp3hl to set off the rniSed arUrts and there is an intelln lo setue on 8 nèt basis or to realise the assel and setue the Ik2bility 9mullanSLy.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Accounting pollcles (Continued) Baslc flnanclalassèts Basic finaal assets, whioh iNJude debtots eash and bank balares. are InallY measured al transaction pri¢e including transaction Costs and are subsequenuy carried at aTrKrtised cost using the effective interèst un18ss the arrangement c£S1111eS a financing transaction. whera thè transaction is measured al the present value of the future receipts discounl8d at a mark8t ratè of IntèrÈst. Financial 8ss8ts lassified as receivable within one year a r1 arnorts"sed. Baslc flnaneial liabililles Basic finanoal liabilities, INIlI¥j (xditors and lJ3nk kjans are tnitialty reccJni8ed at transactlon prfce unless the arrang¢rnenl Gx)nslrtute5 a finanryng transaction. where the debt instrument is measured at the present value of the luture payments discc4Jnled at a market late d inteFesL Finatmial Ik4blitiÈs cJ8sstfied 8S P8yaN8 thin one year are Th)1 amortised. Debt instruments are subsequenty carried atarTK)rti5ed cos( wng the effective interest rale method. Trade creditors 8r8 otrAigatiorts to pay for goods or seThices that have been acqu1 in the otrfinary ¢Durse of oper8b.ons from supplier5. Arnounis paYae are classified as current liab111ties if payrnent is due wthin one year w less. If not. Ihey are presented as nOn-rrent liabilths. Tradè ¢Aeditors are recognised initi'ally at transath'on price aThJ subsequenlty mèasurèd at amorbsèd cA)st using thè 8ffettNe interest Tnethod. Derecogftition of Ilnandal Ilabililies Financial liabiliiies are der8cned whÈn Ihè tharitys obligations expire or are dlscharged or cancelw. 1.12 Taxation Thè Sooaty 8$ a registered charity 15 not c(sidered to t* lithe to taxatK)n. VAT is not rwJ)veTrbl¢ end is induded in reVant expenditure. 1.13 Retir•mwtt bènofits The society contributes 5% of gross salary lo irKlividual erllpk)yges' Pens schernes. ContribJtion5 payable lo individu81 dèfinèd eontrfbuti) pÈnwi sche$ are thanJed to the statement of financial activities In the period to which rÈlatè. -24-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS FOR THE YEAR ENDED 31 DECEMBER 2025 2025 2024 Note¥ Cash flov from ()p¢ratiry a¢bvltl¢s Cash (absorbed byygenerated from operations 1183,2801 612.426 Inv8sting activitles Purchase oftangible ffxed assets Proceeds from lSSaI of inVestnIS Invèstmént Incomè recèiv8d 110.9581 {292.1131 93.436 14.6601 {231,0281 75.627 Net cash us•d In Inv•sttng athiti•s 1209,6351 {160,0611 Net cash gènerated from Ilnan¢lng a¢tfvltf•s N•t Id•cr•as•Yinw•as• in cash and cash oquivalents 1392,9151 452.365 Cash cash equivalents al beginning of year 1.183.776 731,411 Cash and eash equivalents at end of year 790.861 1,183.776 -25-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Crltl¢al a¢untIng ¢stimatss •nd judgements In the application of the Charis acuyunting policles. thè truste8s ar8 wuired to makÈ judgÈmÈnts, 8stim8t8s and assumptions about Ihe (2nying amount of aetS and liabiliti8S that are not readily apparent from othèr sources. The eslimales ar ass(Kxaled 8SSUrnPtions are b858d on historical experience other factors that are considered lo be relevant. Actual reyjtts rrray differ from these estimates. The estimates and urKEerlwng assumpbc*is are revlthved oft an basis. Revisions to ac¢ounting estirnates a recc¥Jnised in the perK)d in whid) the estimate is revsswj where It revision affects only thst period. or in thé paritxl of thè rewston aNI fviure perKMts where the reviston affecls both cuirent arKI fLrture p8riods. Legal ststus Thg d)8rity is a company lirniled by guarantee. The members of the company ar8 the tnJst88s named on page 1. In the event of the charity being vniThJ up. the Ik?bility in respect of th8 guarante8 is limited to £1 per mernber of the charity. Ineome from donations and legacles Unrestrlcled Restrleted funds funds 2025 2025 Total Unrnstrict8d Rèstricted funds funds 2024 2024 Toial 2025 2024 Donations and gifts 237,675 10.034 237,675 17.919 242,514 1,039 242.514 1,039 247.709 255.5 243,553 243.553 Incomé from charltablè aetlvltlÈs Total Unrestrlcted Re5tr1cted funds funds 2024 2024 Totsl fvrKI$ 2D25 lund$ 2025 21525 2024 Advocacy support Grants receivable National Lottery Community Fund- RC England-wide 261.332 S34. 796.296 286.727 319.730 606.457 84.019 84.019 105.935 105,935 Psychological support Grants recEivable 15.000 15,OC Famlly support and SclaI •vènts Grants rewable 20.4(N) 20.400 24.112 24.112 261.332 639.383 1.715 286.727 464.777 751,504
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOUDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Income from other tradlng actmtles Unrnstrfcted Unrestriet•d funds funds 202S 2024 Survey in¢x•me in subsidiary Management fees in sub*d 281,735 652.740 317.546 546.505 Other Irading NItieS 934.475 864,051 Inwne froffj In¥tments UnrestrScted Unrestrictèd funds fvnd5 2025 2024 Rental income Int8r8St recEivate 29.917 63.519 29.917 45.710 75,627 Expènditur• on rnising funds Unrestrict•d Unre$trfct•d fvnd¥ funds 2025 2024 Fundralslng and publlclty Grant consultanry costs Fundraisiro expenses Staff c(bsts Depreo8tion 8nd impaimgnl Support costs 4.337 14,626 108.697 6,370 36,230 19.072 127.786 1.118 28.200 176,176 170,260 Commer¢ial trading activrty Survgy ¢x)sts Staff costs Depciall0n and impaiment SUp[rt cosis 69.843 374.506 3.043 60,330 68,953 345,699 2,276 39,463 507.722 456,391 Total Costs 683.898 626,651
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEAIBER 2025 Expondlture on charltablo aclfvltles Advoeaty Awarèness Tradlng Resèareh seNl¢es & raising activit$ - gr•nts member Patienls support 2025 Total 2025 2025 2025 2025 DirÈct costs Staff costs Depreaation and impaimient confe nce and expert meetings Communication MPS awareness Consultancy Donations and tnkn in mem 383,741 91.726 249,671 725,138 3,634 258,749 6,612 13,641 1,785 1,079 258,749 2.142 4.470 13,641 1.785 1.079 J291 110.676 249.671 1.010.638 Crfant fiJNling of athii'8s Isao note 101 250.09D 250,0 Share of support and govemance costs (see notr 11) Support 78.238 GovernarKe 78.819 102.038 105,821 27.CKJ2 807.348 161.478 249.671 250,090 1,488.587 Analysls by fvnd Unrestricted fijnds Restrictgj fvnds 170.459 636.889 161.478 249.671 144.071 I(,019 725,679 742,908 807,348 161.478 249.671 250.090 1.468.587
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 ExpendibJr• on charttable aclivltl•s (Continuèd) Prèvlous y•ar. Advocacy Awareness Tradlng Research servlces & rdlslng actlvltles- grants member Patlents support 2024 Total 2024 2024 2024 2024 Dlr8ct costs Staff cosis Depreciation and impairment conferen arbd expert meetings Communicabon MPS awareness Donations and tributss in mènK>ry Patient weware gifts 395,134 15.924 140,403 7,033 101.710 230,466 727,310 20,701 140.403 10,692 10,216 1,079 33 3.659 10.216 1,079 559.KE 120.362 230,466 910,434 Grant fiJnding of actIveS Ise8 rKJte 101 B1.934 81,934 Share of support and gov•man¢e costs (see note 11) Support Governance 25.528 30.561 110,622 132.431 101.870 746.570 176.451 230.466 81.934 1.235,421 Analysls by fund Unrestricted funds Restrcte(I funds 244.568 502.002 176.451 230.466 81.934 733.419 502.OD2 746.570 176.451 230.466 81,934 1.235.421 10 Grants payab In 2024. antS were award for six prci8cts Ythi¢h o)vered topi(ts suth as the link belween Fysi¢l actiwty and mental health in adutts wth Fabry disease, and the develcpment of a Tnathemalical model lo calwlate the lj5k of worsening airway and luThJ problems in Fwle wtth MPS tVA Mu. Grants payabk cosls have all been attributed to charitable activity expendilure. -29-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 11 Support costs allocated to act5vSths 2025 2024 Staff costs Depreciation Recruitsnenl and trainir¥J c4Jsts General office expenses Insurance subscripts.ons Staff welfare Computer expenses Bank charge8 Trdvèl and subsistan CgnsuItsn expens¢S (knmance costs 9.906 559 4.498 96,992 16.140 3.053 3.045 30,027 2.864 16.834 6.650 105.821 6,067 88,100 14,352 2,634 14,098 30,882 2,861 17,882 7,129 134.741 296.389 318.746 Analyséd kn". Fundraising Advocacy swwces & rnernber events AwarÈrtess rai&r*J 88,530 157,057 50.802 75,693 1efj.964 56.089 296.389 318,746 2025 2024 Goyvnancg costs comprls•: staff costs DÈpClatioft Audil fees Lagal and professKn Management costs 47,415 280 11,832 2,346 43,948 56.247 4.777 9,438 3,923 60,356 105,821 134.741 12 Net movement in funds 2025 2024 The nel movement funds is ststwj after thargingl((YgdilirvJl: Fees payable for the audit ofthe thaiivs finarKial ststements DewocAation of ned tangle fix•J assets 11,832 8,634 9,438 34,124
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 13 Trust8•$ No tNstee or related person receNed any r8muner8tlon fmm thè Sotièty in rtSet of SÈMP£S as an ernployee of the entity. AJI trustees a 1[scd for their expenses or expenses are paid for by the charity on behalf of trustees, which arè nècÈssarity incurr1 in aitending martageMl cxjmmittee meeb.ngs and in parfomiirKJ thair duties 85 trustÈes. The Chief ExecutNe Officer of the Srxiety aptwoves Ihe 1mbuw9nt of such expenses. In 2025 these totalled £5.252 (2024.. £9.4321 for all trustees. 14 Employees The average Month number rrf pS during thè yÈ8rw8s: 2025 2024 Numbèr Numbtr Chtef exg>JlNes Administration Advice, inlormalion & suppwi Commero81 trading opèrations 13 13 14 13 Total 31 Employm•nt costs 2025 2024 Wagès and s818ffts Soaal security costs Other penslon costs 1.110.309 123,089 51,353 1.082.478 104,393 51.082 1,284.751 1,237.953 The number of ernployees whose annu* rwnuner8tK)n was mLYe th8n £60.0 is as frAIows'. 2025 Number 2024 Numbgr £90.001 - £100.000 Remuneratlon ol key manag•m•nt pwsonn•l The key manage[rt rne1 of the group. com)se the trustw ihe chief executive officer. head of patient semces, head of fundraIng ad of finan. The total emoyee benefits of key management personnel were £295.981 {2024.. £285.0631. The hwJhesl paid employee of the charity and the group had accrued £5,94112024'. £5.7691 in ernpl(ryer pEnsion ntribUonS. 31
SOCIEfY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS {CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 15 Gains and losses on investsxents Unrestrfcted Unrèstrictsd funds fvnd¥ 2025 2024 Gainslllossesl arigThJ on.. Sale of investments 12.4001 18 Taxatlon Th8 charity Is exernpt from laxat•)n on its activibes because all its irKome is applied for charitable purpv5eS. 17 MPS Commgr¢lal Llmltfjd The sub8idiary, MPS Commeraal Limited. had inc(rfning resources of £941.44912024 £911,722) and outgoing resources of £784,76912024 £761.2321 leaving a suWus of £156,68012024 £150,539) which was giftèd to the Soclety for MLtcopolysaccharide Diseases.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (coKllNUED) FOR THE YEAR ENDED 31 DECEMBER 2025 18 Tanglbl• Flx•d Assets- Gr¢up Pr•ohold larKI ComputsrB and tsjlldkngsand 8quint Tolal Cosl At 1 January 2025 Additions R8valuation Transfer to investment property 1.435.389 81,IA1 10.958 1,516,450 10,958 1435.3881 I250,0) 1435,3891 1250,0001 At 31 De¢xHber 2025 750.C(JO 92,019 842,020 Oepreclatlon and Impalrment Al 1 January 2C)25 D8pr8ciation charged in the year Revaluation 465.701 74.164 8,633 539.865 8.633 {465,7011 {465.7011 At 31 Decernber 2(r25 82,797 82.797 Carrylng amount At 31 December 2025 750.000 9,222 759.222 At 31 December 2024 969.688 6,897 978.585 Tanglble Flxed Assets - Charlty Fro•hold1ond Comput•rs artd buildlrkgsand wulpm•nt Total At l January 2025 Additions RÈvalu8tlon Transfef to investment Fxop 1.435.389 63,619 8,658 1,499,ofiB 8.658 1435.3891 I250,0) (435,389) (250.0001 At 31 December 2025 750.OC4) 72,277 822.277 Depreciation and impairmènt At 1 J8nuary 2025 Depreclauon thar@j in thè year R&valuation 465,701 59,456 5.590 525,157 5.5 1465.7011 {465.701) At 31 Decefnber 2025 65,046 65,046 Carrylng amount At 31 Dec8mb&r 2025 750.000 7.231 757,231 At 31 Decembor 2024 969.687 3.257 972,944
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 19 Investment proFerty 2025 Falr value At 1 January 2025 Transfèrs from tsrvJible ffixed assets Yn a relkthle measure of fairvalue becomes available 250.000 At 31 Dec8mb8r2025 250,000 Inveslmenl property compris8s part of thè man vA)ich is now rentéd to 8 tfurd pty th8rity. The fair value gf tho Inv9stsngnt prwty has been 8Erived 81 on tre basi5 of a valu8tn carried out at Th Frost Partnership. who are nol connected the thaty. The valuabon was rnade on an open k81 valu8 bas by reference to market evidence of transadion prices for similar PrOte$. The historical cost of the insImen1 PrOrtyw8S £358.847.
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (coKfiNUED) FOR THE YEAR ENDED 31 DECEPABER 2025 20 Flx•d asset investments - GTOUP Donatsd Bank bonds Jewellery Shares In subsldlarles Total C05t or Yaluatlon At 1 January 2025 Additions Dlsposals 6,100 853,425 821.184 1325.3711 859.525 621,184 (331.4711 {6.1001 Ai 31 December 2025 1.149238 1,149.238 Carrying amount At 31 December 2025 1.149.238 1,149.238 At 31 December 2024 6.1C4] 853,425 859.525 Flxed asset investments- Charity Donated Bank bryid5 jewellery Shares In subsid5artes Total Cost or valuation At 1 January 2025 Additsons tAswsals 6.1(N) 853.425 21.184 (325.3711 859.527 621.184 (331,4711 (6.1001 At 31 December 2025 1.149238 1.149.240 carn9 amount At 31 0¢mber 2025 1,149238 1,149,240 At 31 December 2024 6.100 853,425 859.527 There were no investffletrt assets outSKle the UK. Donatèd jèwellery The donated ieweltery was sjld duriThJ the year. Investment in bank bonds The Society for muc0pySacCharide Diseases reinvestetl £1.149.238 in fixed business bonds, which arè du8 to m8turè wthin less than one year. or the £1.149.238 invested. £130.000 has been allocated lo the designatèd lund. £120.000 for the Research Fund and £430.CK)O for the Semce Devek)pm8nt Fund. -35-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 21 Subsidlarle8 Details ofthe charivs Subsidiar at 31 Drnter 2025 are a5 folhyws: Name of undertaklng Class of % Held shares held Direct Indirgct MPS Commercral Limitgj Rare Disease Research Partners Lirniled Ordlnary £1 Ordinary £1 100.00 100.00 The aggregate (spital and reserv8s arKI thè Ili fof the year of subshjiaries exduded frorn Gvnsol¥Jalion was as follows- Namè of und•rtaklng ProfiVILoss1 Capital and Reserv• MPS Commercaal Limited Rare disease Research Partners Limited The wholty owwy subsidiaries; MPS knmited and Rare Disease Research PartneB Limited and trading and domiant respectively. Both 5ubsi(Jiarie5 are incorpordle(l in Englanrt and Wales, and have the registered offKe of MPS House. Repton Pla. White on Road, Amersharn, Bud(inghamshlre, HP7 9LP. profits 9Frated by subsidiaries are dislributed via Gift to the parent charity undèr a DÉed of Covenant. Debtors-Group 2025 2024 Amounts f#lling duè withln one year. Trade debtors Other debtors PrepayTnents and accxuÈd i[0MÈ 215.163 17.952 85,362 276,939 641 59,881 318.477 337.461 Debtors-charfty 2025 2024 Amounts falllno duè within on• yoar. Tmde debtors Amounts owed by group urKlertakirus Other debtors Popayrnents and 8crnJed In 7.790 256.68 4.615 22.283 15.601 250,539 24 22.795 291,368 288,959
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 Cr•dltors: amounts falling within one yw- Group 2025 2024 Other taxation and social security Trade creditors other creditors Accru$ and dÈfèrrÈd InMÈ 11,867 15.118 451.198 311.354 23.202 27.892 411,369 476.271 789.537 938.734 Creditors: amounts tslltng due within one year- Charity 2025 2024 Trade ¢reditor8 Other crodrtors Aecrijals and deferred ir 6.462 18.275 203.347 6.362 14,236 229.127 228.084 249.725 Induded within other cr&Yilor5 15 deferred irne of £134.370 (2024: £466.3341. D8f8rr8d inrne is recognised in MPS Commercial %there adminislTation fees for patienls are 5PTead a¢¢ordingly their a&soaated p8rM)d. Deferr8d in Th8 Sty For Mucopclysaccharide Diseases is recognised in respect of grants whère th8 perfomiance agreement runs across multiple periods. AJI of the deferred incorne recorded in 2024 h88 begn subsequently recogni%d as in(Kxne In 2025. 24 R•llrwn•nt bon•llt schemes 2025 2024 Defined contrfbuUon schgm8s Charge to profft or loss In respect ofdefined ccffltribulion schemes 51,353 51.082 The charity ¢perates a dofined o)nln"IX.tM 10n stheme fty al qualn9 employees. The assets of the scheme are held separdtely frn 11K of the charty in an ileleY administered fund. Al 31 December 2025 the amounts oKtslanding were £7.672 (2024 £7.0551. -37-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 25 Unrestrlcted funds - Group The unreskn¢ted ndS ofthe charity cornpre the unexpended b8lan(s of donabgns and grants lch arè not subject lo spe¢rfic conditlons by donors aThJ granlors as to how they may be use(l. These include designated funds whth hav& been sgt askye out of unrestn.cled bjnds bythe trustee5 lor spècffic purpose5. Group At 1 January 2025 Incoming RÈsourees resources expended Transfors Gain5 and losses At31 Dembtr 2025 Generae charitable fiJnd Propety tund Research lund S8rvictr devdoprnent fund 8uilding rebJrbishment fund Christine Lavery memorial frjnd 750.CKIJ 969.687 104.W36 1,533,916 11265.MJ5) 1266,011) 12,4001 30,313 750.000 1,OC(J.000 1CK),000 1144.072) 136.100 263.570 166.011 429,581 65,500 65,500 100.C(KJ 136,100) 63,900 2.253,&33 1.536.952 11.409,577) 27,913 2.408.981 Previous year. At 1 January 2024 Incomlng rèsourtss Resource5 •xpended Twansf8r5 Galns and losses At31 December 2024 GeneratAe charitsble fund Property fvnd Research lund Service devdopment fund Buikling fvrbishm8nl fund Christine L8Vèry rnernori fund 750.) 998,395 97,174 1.380.262 (1214.928) 128,7081 181.934) (165.3341 750.000 969.687 104,936 89.696 165.334 263.570 100,(KJ {34.5) 65.500 100.IX 100.000 2,143.805 1.469.958 {1.360.0701 2.253.693
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (coKllNUED) FOR THE YEAR ENDED 31 DECEMBER 2025 25 Unr•strict•d funds- Group {Continued) Charlty At 1 January Incoming R•sourc•s Trnnsf•rs Gains and loss At31 December 2025 Generable charifable fund Property fvnd Rese8rch fund Sarviee d8vÈlopm8nt nd Buikling refiJrbishm8nl fund Ghrisline Lavery morial fund 750.000 969,687 104.936 749.147 1480.7361 P66.0111 12,4001 30,313 750.000 1,000.000 100.000 3.036 1144.072} 136,100 263.570 166,011 429.581 65.500 1,000 136.1001 F.900 2,253,693 752.183 (624.8081 27.913 2.408,981 Prgvious ygar At 1 January Incoming ReSQUTCg5 Transfers Gains and 2024 resources expended loss0s At31 Dècember 2024 Genefable charrtabl¢ fund Propetyfund Research fund Serwce developrnenl fund Buildi refurbishm8nt fund Christine Lavery mem181 furKI 750,W) 998.395 97.174 603.709 1438.3751 128.708) (81.934) 11P.334} 750,000 969,687 104,936 89.6 165.334 263,570 1(K).(KJO {34.500) 65,500 1LM),LKJO 100,000 2.143.805 905.958 I.070) 2,253.693
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 26 RtrIct#d funds- Group and Chartty The restricled funds of the charity comprise the unexpend8d balanrx of donatlorts and grants held trust subjecl to speafic conditions by dorS a5 to how they may be used. Al l January 2025 Incomlng rnsources Re50urce8 expended At31 DÈc•mb8r 2025 MPS tricted fund LSD restricted fvnd R8search triCtsd bjnd 639.8 1636.8891 19,4871 196.5321 48,050 9,487 109.877 21.230 164.920 647,268 (742.9081 69.280 Prevrous year. At l January Incixning Resources 2024 rnsourtss expended At31 De¢ember 2024 MPS restrict*l fvrm LSD restri¢tgd fund Research restrictsd ftjnd 76,928 1 5,340 109.877 464,777 1496.1491 15.8531 45.556 9.487 109.877 202.145 1502.0021 164,920 202.145 464,TTI 1502.0021 164.920 Restricted fvnds MPS restrcted fund- to supwrt Dis8as8 booklets and AdvcN2cy seNs. LSD restricted fftJnd- lo support Lysosornal Storag9 Disease related meetings and conferences. R8search restricied frJnd- to svppKJrt MPS rBlatgd pro5. 27 Analysis of net assets betWn funds Unrestrlcted fvnds 2025 Restrictgd fvrrfl$ 2025 Total 2025 At 31 Dèc•mb•r 2025: Tangible assets Inveslrnenl woperties Investments Currertt 8$s8tslllkqblltbesl 759,222 250,000 1,149,238 250,521 759,222 250.000 1.149.238 319.801 69,280 2.408.981 69,280 2,478.261 -40-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2025 27 An•lysis of net assets between funds IConUnu•dl Unrestrlctod Rgstricted fvnds funds 2024 2024 Total 2024 At 31 D•cOmr 2024". Tangible assets Inve5trnents Current 8ssetsllliabilitie5) 976.585 859.525 417.583 976,585 859,525 582.503 164,920 2.253.693 164.920 2.418,613 28 Related party transactlons Transacn6 vAth related parties During the yéar th8 charity èntered into thè followng ts8nsaths vAth r8la18d p8rti8S: MPS Commerdal L(mited and Rare Disease Researth Partn8rs Limit8d are 100% owned subsKJiaries of The Socièty for MueopolysaccharKle Disèases. Iauded in other debtors within Ihe charitable company the interDJmpany balance of £250.539 12024.. £250,539). All the profiis of MPS Commeroal Limited for the period have been distrsbuted by Gift to the Larity. these totalled £156.681 12C124'. £150.5391. Rent and recharges of £27,37512024: £34.375) were made by The ScKiety for MLMX)polysactharide Diseases to MPS Commerct81 Limited. The Society for Mucopdysacthaiide Diseases has provhled MPS ComrrEwl Limited wth a t2,0 long- lemi loan12024: £200.C4) on whic interest of £6.37512024: £14.3751 vrds tharged. -41-
SOCIETY FOR MUCOPOLYSACCHARIDE DISEASES CONSOLIDATED STATEMENT OF CASH FLOWS (coKnNUED) FOR THE YEAR ENDED 31 DECEAIBER 2025 29 Cash (absorbed byygeneraled from operations 2025 2024 Surplus for the y8ar 29,335 72.fj63 AdJustm•nts for. Investment Inc£Mne recogntsed statement of ffinanc4al acbwthes Loss on dispos of investm8nts Oepreciation and iMprnient of langlble fixed assets 193.436) 2,400 (75,6271 34,124 MovÈmènts In working capltal.. Decrease in dEbtprs (Decreaseyincrease in rThdilors 18,984 1149,1971 202,807 378,459 Cash {absort)ed byygenerated from operatlons 1183,2801 612,426 30 Analysls of changes In netfunds The charity had no matertal debt durirwJ the year. -42-