The UK Mastocytosis Support Group Report to March 31, 2025 Charity Number1201970 l. Chair's Annual Report 2. Trust88s' Annual Report 3. Financial Report Ov•rvlaw l om Pleased to sharo Ihol The UK Mastocytosls Support Group hos hcmj o SUCC8ssful year in corrying out its mission, Its second in the prèsent form as a CIO. but building on the many yaors os an unlncorporated chartty and informal voluntary organisation before thaL We are nugely gratetul to our volunieers who carry out oll our worl to our community who support ond help each other in our support forms, and to tha physiclans and researchers, and thè pharmoceutlcal companies who collaborat with us and help us do our port to improve the Ilves of peoplè suffering wlth mast cell diseases. We ore enormously grateful to the mary people who make small and larger donotions to tho charty and who porticipat8 in fund raising challangeg that allow us to do our work! Thonk you SO much to Jennrfer Hodd, Heather Kilsby, Chrls Gray, The Rogers Famlly, Mark Wllllams ond Richie Stephens tor ralslng funds for the charity. Soclal Medla During tnis yaar we r￿ve contlnuea io t)on8111 Irom havln9 8gcKy Wllllams (now 0Sso a trust88) leading our social medla18CKllng to regular posts and a continugd increase in our 6ngagemenL We participated in the annual awareness campaign for Internationol Mastocytosis and Mast Cell Diseases Awareness Doy {www.mastocytosis-mcas.org) via our intern(rtional portnership os well. We aro pleased that we gained many new followers on Facebook in FY 24125. Regular platforms included Facebook (vio The UK Mastocytosis Support Group Information Page), Instagram and Linkedln, with content aimed ot educoting patients about their disease and raising awareness about th8 condltlons and patlent oxperiences omong clinicions. Support We continue to provide I:1 support by telephone and text to severol pcrtients per weel with the bulk of our support being provided through Heolth Unlocked and our associated private Face book group. Health un1￿ked has 685 members, up from 613 in January 2024. It remalns less active by far than Focebool but W8 are glad to provide this olternotive to people who prefor not to share information on Faceboo￿ The Facebook group now hos more than Z240 members, an oddition of 200 people sinc6 2024, orKI more than 1,000 w8r8 "octiva" (occordirKJ to Facebook) in the seven days bofora this report was written. We pride ourselves on ensuring that the information we shar8 In our support forums Is ellher bosed patlent experlence or draws from the increaslng p8er- revl8Wod 8vid8nce txjse about our conditions. Wè arè wary of information provided by Al, which when shared In our group has occasionally included wrong Information (not consistent with th8 resaarch literature) ond are caralully moderating that content now that it is so readily avoiloble. we reflected on our experlence wlth our in-person even In March 2024 whlch was lovély but hod o lot of drop-off of attendees as the day n8ar8d and d8cided to hold ofF on moro in-person events given the financial constroints peopla are under, the dlff iculties ol troveling with a most cell dlsease, and the Increased costs of rgntlng space and staff travel. This Isn't a forover declsion, as wa did host a hybrid event in September 2025 at the ECNM in London (where the hosting costs Wgrg covorod by the ECNM), but it is o dgcision to rgvisiL Advocacy and Publlc Pollcy Wg ore delighted to report that during this fiscol year th8 new medicine ovapritinib was approved for people with advanced forms of systemic mastocytosls by thg Med￿lneS and Heallhcarg product R8gulatory Aggncy (MHRA) and by the National Institute for Health and Care Excellence (NICE) for use in England, Northern Ireland and Wole* AS Stakeholders in the NICE assessment of avapritinib, our job vns to communicate about the exporience of people with advanced SM and to ènsure that th8 information that was b8ing us6d to do the economic assessment reflected the patient experience as wèil 09 possiblè. In June of 2024 we were asked by NICE for additional inputs on particular areos they fèlt wère stlll unclear and we consulted with doctors and oth8r patiant group leaders about how best to meet thase feqU6Sts ond consultèd again with patients to ensure understood their experience. I want to recognise Andrew Dugdale for his efforts at thot time. I want to thank the other potiants who ware willing to participote in thè July 2024 committee meeting and in particular to thank the one who ultimately did F)articipate alongsida ma. Comrnitt00 magtirys can ba daunting 8xp8rtenc8s. but the potiant voice is so importanL We are very pleased that avapritlnib wos approv8d by NICE (whlch led to approval for Wales ar)d Northern Ireland) in November 2024 for advonced SM and by aarly in 2025 wo8 being used by patients. Approval in scotland is perxjing though the process has beèn initiat8d, and patiants are receivin9 approval for individuol use in the interim. Wa olso continued to engage with NHS EnglarKI on implemantation of the Rare Diseases From8work and Actlon Plans through membership in the Englond Rare Dlsease Actlon pian patient Advlsory Group. We had ongolng partlclpotbon In meetings of the Gen8tic Alliance UK'S Potiènt Empowerment Group, which highlights kèy policy Issues and acts os o conduit for input from patlent groups on these issues. Wlth the goal of Improvlng access to regular madicinas such as ketotrfen ond sodlum cromogllcate, which frequently go out of stocl a trustee sits on th8 Brltlsh A$$ociotion of Dormatology's Madicines Worklng Group, allowlng tho BAD to holp In outreoch around these issues. Thls Involvement contlnuad in FY 24125, though supplles have been more stabl& Ot concern hus been the incr8ose in cost of sodlum cromoglicota. We also participate in the BAO'S Patiant Advocacy Group Boar(#, which allows us to engage with tho BAD senlor leadershlp and mako ¢onn8ctlons to other patlent groups In th• lield for Collaboration and co-learnlng. A m8mber of our team contlnued thelr roie on the Cllnical Reforonca Group lor Speclalised Services in Allergy and Immunology (as o Potient and Public Voice member) with new specifications for a118rgy practica now b8lng Implemented tnat expiicltiy o¢Y(Iress what care mastocytosls ana MCAS patlents should expect in odult allergy spacialised service& We also are members of Cancer5Z an umbrella charity that advocates for people with rare cancers (Such as the advoncad forms of systemic mastocytosis) and toke opportunitias to learn from them and from the other rare cancer charities. Recently we have Joinod tvrfo of their committees (access to medicines ond dato working group) in order to learn from other charities about their experiences with NICE and interact with NICE about the experience of smoll ror& digéosè ehoritiag. ond to18arn from others to inform our registry d&velopmenL In January, 2025 we also joined the National Allergy Strategy Group, with the gool of nudging the strategy for future for allergy policy in the UK to include mast cell disease& Tralnlngs Our team ottènded trolnir￿ on th8 r8s8orch funding landscope. and on running peer support progroms, run by Beacon for Rore Disease& We were also glad to b8 part of Beacon's mentoring program in FY 24125, recoiving support from an experienGed leoder of a pat￿nI registry. Reglstry During FY24125 we very actively engaged wrth stakeholders in the UK ond the US r8garding th8 co-development of o most cell diseoses registry. We helped convena and18od meatings with leading clinicians and researcher4 pharmaceutical comF)onies, and pcrtient (Klvocates to identity and choose registry platforms to ￿ used in parallal in tha UK and US to d8v8lop thls vltal tool for movlng r8seorch forward. Those registry contracts ore now in place (￿25126) and wa are moving forward with the concentrated work that willload to th• launch. Collal)oratlon wlth 81osclence8 We have maintained contact with a nurn￿r of phormaeeutical companias including three who are running trials in the UK to understarKI how the trlals are unfolding, wh6ther there are regulatory hold-ups that we could try to help to cl@or, and to holp inform patients abouttrials where appropriotè. W@ algo wnrk to ensura that companies understand the experience of our potients and toke that Into account when developing clinical triols and consent materials, and that théy understand what klnd of data needs to be collected to make approval by MHRA and NICE more likely. Intematlonal Collaboratlon Two trugteag attendea a gotherlng of patlant group18ad8rs f rom around Europe In February 2025 to strengthen ties, share experiences, and considef developlng collaborative projects to improve the lives of patients with mast c811 disaasès. This event was fund8d tsy Blueprint M8dlcln8S, t)ut tn8 content 01 tn8 evant was not related to drug development or ony particular medicina. We aro members of tho Internotionol Mostocytosis and Mast Cell Disease Awareness Day CommFttee and provlde regular input about our comMur￿l work. We ore members of EURODIS, the European rare dlseases orgonisation, and of Global Skiry on international dermatology group. In the winter of 2025 we also becarna members ol tha patiènt Organisation Committee of the European Acodemy ol Allergy & Clinicol Immunology. th@ flrst timg a mast call diS￿Se group has t)oan r8presanted there. PRISM study Thg PRISM study is a collaborative project invofvlng patient group leaders, cllnicians, and researchers with the oim of gathering information about the quality of lif8 and patient experience in systemlc mastocytosis. The study was sponsored by Blueprint Med￿lnes. Durlng FY24125 the main poper reporting the data was draftad and submitted for publication, with a number of sci8ntific posters wrltton up and submitted to modlcal congr8ss8s in allargy and haematology. Our teom helped to devek)p the survey, our members and UK clinicians completed the survey, and mambers of our team holpgd to anolyse the data an(J develop the sclentlflc paper& Outraach We attended the annual meeting ol the British Society for Hoemotology, o first for the charity. It was a great opportunity to eonnact with naw haamotologists, meet patient group leaders and sharo information to improve the sp88d of diagnosis and quality of care of mast cell di88ase patients. We had the satisfying oxperi6nce of shoring photos of tha typicol skin18sions of systamic mastocY(0918 and havlng a haemotologist realis8 ha'd seen a patient recently and h(￿n recognised SL The haematologlst sald hadn't though he needed to know about mostocytosls because of hls area of speciolty. which was unrelated. For the first tlme in mony years, we were unoble to att8nd tho British Associatlon of Dermatology (BAD) annual congress due to ill health. we provided a QR code that our friends from another charity put at our stand at thg event thatlod to a webpage wlth kay materlals we would have shared in person. Jess Hobort ottended the annual conference of the Europ8an Compatenc8 Natwork on Mastocytosis In Berlin, wnere She helped F)ati8ntS Share thèir quastions witn a panel of experts during a panel shared on Zoom in additFon to leorning ab(XJt the latest research. New Logo and Brand W8 engaged a company to help us with developing our new brand and logo and another to help us launch o new website. we have begun a slow rollout of the new logo and look forward to shorlng the now y￿bsIte in 2026. Patient Materlals We received a BAD gront thls year to support development of new mcrterials on indolènt SM ond poadiatric mastocytosis. That project hos been delayed by volunteer ill-health, but is in process. Wa also helped conceptualise and ￿entity intenilaweas for th8 issug ot Rora Rèvolution Mogazin8 obout systemic mostocytosis (released In Juno 2025) thot included conversations with UK patienty patient leoders from around th8 world, and of our UK physiclans. In Remembrance We want to acknowledge the valuable role Andraw txjgdala played In the charlty and in particular in @xplaining life with oO4onced Systemic mastocytosls to NICE without pulling any punchas. Andrew died In October 202b. His spirit ol spoaking truth to those who need to hear it will continue in his absence. Looklng Forward As we look forward trom January 2026. we have already made good progress in some areas since the end of FY 24125. Here are some additional areas we will be focusing on. Patlont Support-communlty Comer In addition to th• SUPPOrt wé eontinuè to provlde I:1 by phone or vic*oconference and vio our Facebook and Health Unlocked platforms, we are looking forward to launc.hin9 aur flrst Community Corner Zoom event in Februory 2026 at which poti8nts ond families vlill have the opportunSty to shore their experiences and feel more connected to a community. We recognise that mast C811 diseases can be isolating and look forward to S88ing how our community responds to this new series of events. Now Patlont Mat•rfal8 and Web8ft0 We ar8 contlnulng work on developing new potlent materials with a grant recelved from the BAD in FY24125 to support those publicotions and look foN4ard to comploting the dovolopmant of our naw wabsita ond launching it. Both of these projects wgre delayed duo to111 hgalth ol a kgy volunteer In FY24125 but will be completed in 2026. Advoeaey, Aeeess to Medlclne8, Care Pathways During the summer and autumn of 2025, we engaged in the first stages of the NICE assessment of ovopritinib for moderate to sèvaro indolent systemlc mastocytosis. Many thanks to everyone who part￿1pated in the survey we put out to SUPFX)rt our submi$$ion. That participatlon allows us to paint a vlvld picturo with your words of what it's like to live with ISM. The process continues with tha next key step (the committee meeting) in May 2026. we don't have control over many things in this process-and can't make maths work if it do8sn'¢ but we will do our best to ensure that the Committ￿ decisionmakers understand how much new medicines are needed for moder(yte to sevére ISM. Wo are also awaiting (likely spring 2026) for the ossessment of avapritinib for advanced SM in scotland and will play our role in that process when invited, We aro also continuing to develop our skills ral(rtad to NICE processes ond to understand patiant 8XP8rience, We ore commenting on the NICE'S proposed Quolty Standards for Rare Diseases (January 2026 consultation) in hopes t￿t the standards and useful and Implamentabte and ultimately improve the quality of care recelved by MCD patients. We look forward to participating in tha development of the care pathwoy for syst8mlc mastocytosis in 2026 und8r the auspices of tha British Society of Hoematology. We will continue to vlork toward improved access to ond quality of care for all people wlth mast cell diseases Ihrough the Clinical Reference Group. Job Centre letter-collecting info from patlents about thoir experiences In the workplaca to develop a set of examples of how employers might be able to accommodate people with most co11 disoasos. Developing rasoureè. Co Regl8try A well created and run registry ¢rgata$ a fich environmont of data that will allow rgsearchers to bagln to devalop new InS￿htS otK)Ut the nature of mast call diseases, what Is slmllar and dlfferent across populations, what treotm8nts have whlch alfects, and which people do well over time ond which ones foca oddltlonal challenges. Such a reglstry can transform the research landscape but Is also an expensive endeovour and ensuring that it is financially vlable and sustainable wlll be the work of tho next few years. we are at the key stage whero wa ore making daclslons about oxaetly what dota to collect for both patient~entorad data and cliniclan-ént8r8d data. We Ofe olso beginning to put in place th8 gailethicsldata protection infrastructure and toking other practicol steps towords lounchlng the reglstry thls year. I thank èveryone for their support ol our work in the post and look fotword to worklng together to make life better for all p80pla with mast cell diseas8S. Jess HoDar( MPP, MPH Chair 2. Trustees. Annu Charlty Name: The UK Mast￿Y10S1S Support Group, also known as UK Masto Chority Number.1201970 P@riod.. 01 April 2024 to 31 March 2025 Principal address: As the charity h03 no premises, tt can be roachod through it8 PO8tol oddrag9: 88-90 Paul Street London EC2A 4NE Summary of purpo•M• The UK Mastocytosis Support Group (cio) was established for the Prese￿atIOn and protection of health and the reliaf ol need in porticulor by. l. Providing advice, SUPPOrt and information to improve quality of lifa for mast cell diseose patients and their carers 2. Provldlng or asslstlng In the provislon of Information to the publlc about mast C811 dis8QSaS 3. Supporting medlcal profasslonals in th•ir undorstonding of mast cell dlseasas, théir dlagnosis, prognosis and tr8crtmant 4. Supporting research Into mast cell diseases, their couses ond the means to improve the health and quality of life outcomes for thoso suffering with tha conditlon and promoting the disseminotton of the useful results of such r6search. Whlle thls CIO wa8 astoblishod only In 2023, It was creatad to take over tho VKJrk ol the unlncorporated charty of the some name that had bean establlshed in 2014 (and closed In 2024). ond thot unincorFX)rated Cr￿11ty bullt on the wort of thè less formal support group that was flrst formed In 2004 by Irene Wllson. The newly formed CIO was opproved by tho Charty Commlsslon on February 18, 2023, and the old, unincorporated charity was formally closéd by tha Charlty commisslon on Jonuary 30, 2024. stat•m•nt ol Maln Aetlvltkn and al AehI•v•m•￿. sae appended Chalr's Réport Qov•rnane•: Ttte UK Ma$tOeY(0gis Support Group is registered charity number1201970. governed by th8 Charities Act 2006. The charlty is a Chorltoblo Incorporated Organisation registered on16 Febnjary 2023 (Foundation mod81). Its onty voting members are Its Trustees. The UK MastocytOSiS SUPPOrt Group's gov8rnance is describ8d in its constitution. The policy and operating decisions of the charity Ile with its Trustees. who are listed below. New trustees ore apFxJint8d by th8 Serving trustees, considaring the skills required by tho Ix)arcL Flnanclal Rovlthy. The UK Mostocytosis Support Group is in a reasonable financial position in that it has substantial assets that have been transferred from the unincorporated charity, with £126,184 hald ot year end FY 24125. The usual expénditurés for the unincorporated charity ranged from approximately £5,000 to £10,000 per year, wlth no fixed staff costs and costs ossociated onty wlth carrylng out the activities that move th8 mission forward such as outreach, potiant events, and softwora and services for e.g. communications, data storage and mointenance of the charity and its website. In FY24125 we spent funds to help develop a new logo and bronding for chority, which were an investment into the new charlty. A new webslte Is belng ttev8loped uslng that and wlll b8 launchgd In 2028. That Is reflected In the increased spending In the "marketing and fundrolsing" category. The charitys prlmary sources of income are subscriptions from tha community of p8opl8 Wlth mast cell dis8as8s, fundraising events taken on by memb8rs of our communty, occasional large or small donations, and occasionally, honoraria for $8rviees providèd thot relota diractly to and furthor the mission of tha chorlty. We are gratoful to our community for their fundralsing efforts and expect that our communlty will contlnue to engage In such 8v8nts. The charity holds £40,000 that is interKled to be directed to the registry project, a contract for whlch was signed in late 2025 and it is expected that some of that £40,000 will ba used to aupport that projact in FY 26127. polky. l Operating & Off lee Expensas: This lund is used to finance the total oparating expanses of tho chority (excluding gifts and allfxotions). Income to this fund is fwom dir8Ct gilts,18gacy Income and ony investment income received Level to be held: one yearfs equivolent of expenses. 2 Strate9ic Projects: Tha main contents of this lund are strotegtc inrtiotives and training and support of volunteers ond any future employees. The main source of income is from designated gifts and funds allocated by the Tnjstees. Lev81 to be held: two years equivalent allocation is retained as a raserve. 3 Capitol R8quirem8nts: This fund will be used to plan arKI execute capital projects. The reserva wlll also ba used to allow for unexpected Costs, 1.9. ftgms which are not detailed in the financiol plan ore mond(rtory. An 8xompl8 of this would be18gal and regulatory changes. Funding will coma from internal transfers from the general lund and plonnlng process. Level to bè held: £lO.000 Aeeountlng P•Aod: The accountirrfJ period runs frorn April I to March 21. Tru•tM• durlng FY 202412025: Jessica Hobart (Chair) Becky Wllllams (Secretary) L8wls Williams (Treasurer) Chorlotte Lane (Secr8tary- retired January 2025) Randolph Perkins-smart (Treasurer-retired Fab 2025) CHARITY COMMISSION FOR ENGLANO ANO WAIES Receipts and payments accounts CC16a Forth• peiiod from To Section A Receipts and payments Unr•8trict•d fund• Endowm•nt lunds Restricted funds Total funds La•t y•ar to th* rw•* £ to M•r•Bt É A1 Re￿1 t¥ Jas niaN• Act￿Tr Subscrl I￿nS HDnorarbJTh Inlorggt Inc Grknt8 Rtt•lvéd 255 2JO 230 ARJ 12.212 12.213 J.74d A2 AM•1 and Inv••tm•nt Sub ¢otal Tot•lr•c•lpts 12.212 12,212 3,746 A3 s•s aNJ FufvJraMI Jo 410 13S 141 Ihhèr E tYJltutfj$ Sub6GrWlk>D8 & Wth•rshlp9 125 3JlJ 155 Publ￿allonS 155 Sub total 113•4 13,394 9.627 A4 Aaut and InvMtm•nt purch￿01,{••o tabh) Sub total Tot•lpayments 13,394 13,)•4 9,827 Ngt ofrnC8Ws/(paymw￿j AS Transl•rn botwwn lund• A6 Cash funds las¢ year end Cash lunds thls yearend 1,182 127,346 127.346 88,164 40,000 126.184 8.081 CCXX R1 ao))unts ISSI 3110112026 Section B Statement of assets and liabilities at the end of the period unrD5tnci R8sLrtCloU fun(15 fund8 enuowmpnt fund8 tr•v￿reSt £ B1 Cash fundB Cash In I￿k 8S73• trthsf Rggstry FuThts 40.QOO T*ltsle•*h 86,164 40.000 Un￿t￿t•d Ro•tslct•d fund* Endowm•nt fvndK tund# Detai15 torn•r••t É B2 Oth•r momtary a890ts rr•M ￿1 Detalls 83 knv••tm•rt •s••ts rr•rt v•1 Details 84 A•Mts r•l*ln•d for th• ehirty's u•• Vll¥n dL• Doiai15 Il•LIIIty Skjntd by one ortw b)Jste•s on b8hBff of 311 trust88B Pfknl Na Datè of aFWOV81 JGs