2024-03-31-accounts

The UK Mastocytosls Support Group Report to March 31. 2024 Charity Number 1201970

1. Chalr's Annu81 Report
2. Trustees'Annual Report
3. Flnancial Report

Qy.orvl¢ 1am pleased to share thatThe UK Mastocytosissupport Group has had both a very 8UGGessfulfirstyear in carrying out r(s mission as a CIO, and anoth8ryear in a long string of many In which we as a team have been moNing the mission forward In the unincorporatèd eharityth8t preceded thè eio. We are hugely grateful to ourvolunteers who carry outourwork. to our communitywho suppon and help each other in our support forms, and to the physicians and researcherswho collaboratewith us and help us do our partto improve the lives of people 8ufferingwlth mast cell diseases. We are algo gratetul to the many peopl8who make small and larger donations to tne charlty and who participate in fundralslng challenges that allow us 10 do ourwork. Because of the overlap ofthe old unincorporated charity and the new CIO. some of those fundraising events are not evident in the accounts lappearlng instead in the accounts of the unlncorporatecl charlry whose assets then transferred to the CIO). but they are greatly appreciatedl SoclaLM•dla Duringthis yearwe had the benefit of having BeckyWllli8ms take over our soclal media. leading to regularweekly posts and a signlficant increase In our engagement. We partlclpated In the annual awareness campaign for International Mastocytosis and Mast Cell Dlsease3 Awareness Day {www.mastocytosis-mcas.orgi via our Internatlonal partnershlp as well. Regular plattorms included Facebook (vla The UK Mastocytosls support Group Informatlon Poge). Twitter, Inaiagram and Linkedln, with oontont aimod at educating patients about their disease and raising awareness about the conditions and patient experiences among clinicians. Support We continue to provlde 1.1 support bytelephone and textto several patlents perweek, with the bulk of our support being provided through Health Unlocked and our associated private Facebook group. Health Unlocked has 613 members. up from 275 in January 2023. It remains less active byfarthan Facebook, but we are glad to providethis alternative to people who prefer nol to share informalion on Facebook. The Facebook group now has more than 2,042 members. an addition of400 people since 2023, wilh 1250 considered by Facebook lo b8"actlve" members. We pride ourselves on ensuringthatthe information we share in our Support forums is either based patient experience or draws from the increasing peer-reviewed evidence base about our conditions.

In this tiscalyearwe began ourengagementwith NICEforthe appraisal new medicine. avapriiinib. for advanced systemic mastocytosis. In July and August 2023. we submitted ext8nsive comments on the Draftscope after consultation with a group of UK haematologists and in January and February surveyed peoplewith Advsm and thelr carers and prepared ourTechnical Engagement submission. We again submitted togetherwith the charity Leukaemi8 Care. as we did for midostaurin, with us takingthe lead in drartlng because Df our knowledRe of the dlseases an(J patient and physician conTactg. We apprÈr.late their expertlse around the NICE sfA process and Glarifylng what is expected. Theflnai steps otthis process {which led to approvalfor all types of advanced sy8temi¢ Ma8t0c￿0$IS} occurred in the followin8 fiscal year. We also engaged In the development of the Rare Dlseases Framework andAction Plans for NHS England through membershlp England Rare Disease Action Pian Patient Advisory Group. Our messages forthe Action Aan were around access to old medicines (supply issues) and new medicines INICEINHSE routing for technology assessment), ensurlng that adult-onset and non-genetic conditions are considered, ensurin8that services that are not highly specialised are also improved, and that concèrns of people with non-life shortening but diff icult chronic condltlons were al80 Included in the plan. We had ongoing partlclpation in meetings ofthe Genetic Alllance UK'S Patient Empowerment Group. which highlights key pollcy Issues and acts as a Gonduli for input on key pollcy183ue8. We participated in a working group meetingwlih NICE about how they can engage more eff ectively and support very small charltle8 engaging In their technology appraisals. With the goal ol improving acc8SSto regular medicines such as k8totifen and sodlum cromogiycate, which frequently go out ot stock, a trustee sits on the British AssoGiatlon of Dermatolo8y's Medicines Working Group, allowing the BAD to help in outreach around these i88ues. We also partlclpate in the BAD'3 Patient Advocacy Group Board, which allows us to engage with the BAD senior leadershlp and rnake connecuons to other patlent groups in the field for collabordtlon and co-learnlng. A member of our ream has alsojoined the Clinical Reference Group for Specl81ised Services In Allergy and ImmunolDgy ias 8 Patlent and Public Voice member). an NHS Engian(J body tf*at Inclu(Jes several pailentslpaileni aovocales to include the volce ol patients in discussions related to services for adults in allergy and immunology. We also are members ot Cancer52. an umbrella Charitythat advocatesfor people with rare cancers {such as the advanced forrns of systemic magtocytosisl and take opportunities to learn from them and from the otherrare cancer charrties. W8 also attended several All-party Parli8ment8ry Group meetings to raise issues importantto our community. These included one on access to medicines (and delays at the MHRAI and one about developing national alert cardsfor people with rare diseases that Gould be used in A&E.

Three of ourteam participated In 8 two-parttraining program on howto support ¢alls/m&g8ages from peoplewho may befÈèling suicid81_ We also attended trainlng in the use of Al tor patlenr cnarities. run by Beacon tor Rare Dlseases. Rogi•iry During FY23124 we very activelyengaged with stakeholders in the UK 8nd the US regarding the co-development of a rnast cell diseases r8gistry. We helped convenè and lead meetings with leading clinicians and researchers. pharmaceutical companies, and patient advocates to help understand the needs ol these key stakeholders 8nd to understand what resources may be available. We had a number ol possible plattorm vendors pltch to us about their products and worked toward narrowlng down those platforms. The transition to a CIO lays the foundation for being able to create the structure8 needed tor a registry. Patlont£onforotKJ we heid ourflrst In-person event post-COVID. wllh a day-long conferenGe for people wlth mast cell diseases and their carers in Manchester. The event attracted 47 8ttèndee8. Speakerswere Dr Deeptl Radia. Dr Priya Sriskandarajah, DrAndrewWhyte and Dr PeterArkwright. Sessions focused on paediatric and adult forms of mast cell dlseases, Including ma31ocyt0313, MCAS, and heredltary alpha tryptasaemla, alon8 wlth special sessions on managing 8naphylaxis. The day ended with the opponunity to Share experiences with others about livingwith or caring for someone wlth a mast cell disease. Attendee feedback wasvery posllive. -l*e attended many conferences over the year8, and they have all been veryw811 organi80d And amazlng Informatlon. I h8ve learnt something different and new at this latest one and hope that we h8ve these 8mazlng doctors and conferences to look foNiard to in the future.°'Thank you 80 much for a great day! I got so rnuch from tne Oociors on the day! Greai io see everyone tool Been atthis 8 years nowand 8till18arning!Jl 8ut also. members noted thattheywould have lik8d to have recording8 for those who could not travel for the 8vent. CollaboratIott￿tlLPharm2 We have maintained contactwith several ph8rm8C8UtIc81 companies includlng two who are runningtrials in the UK to understand howthe trials are unfolding, whether there are regulatory hold-upsthatwe could tryto helpto clear, and to help dlrect patients to the trialswhere appropriale. The PRISM study is a collaboratNe project involving patient group leaders, clinician8, and re8earGher8 with the aim of gathering infomation aboutthe quality of life and patient experience in systemic mastocytosis. The study has been sponsored by Blueprint Medicines. During FY23124 the surveys closed for new re$pons89 and analysis began. wlth a number of scientific posters wrillen up and submitted to medical congresses in allergy. haematolo8rf. and in h88lth economics and outcomes r8search. Ourteam helped to develop the surw. our members and UK clinlcians completed the survey. and members ot ourteam helped to analyse the data and develop the scientific POSl8rs.

Charlotte Lane 8nd Jess Hobart attended the British Association of Dermatology {BAO) annual congress in Liverpool. sharing materlals wilh dermatologists and helpingthem understand the needs of mastcelL disease patients. We also attended, forthe first time. the annual congress of the British Society ofAllergy and Clinical Immunology In Harrogate, and met new aiiergists who are seelng peoplewllh mast cell diseases. Je8S al80 aiiended the annual conference ot the European Competence NeNork on MdblocytDSiS in Antwerp, where she gave an update from Europoan p8tientgroup8 on developments in thelrcountries. and gave a presentatlon about patients'top concerns and about engaging in health technology assessrnent, with the aim of h8lpingto shape future research agendas. We allended an online meetlng with mast cell disease patlent group leaders from around Europe and shared experlences and challenges. We expanded our netyiork of doctors we collaborate closelywlth. particularly around the NICE process for 8veprltlnib, and vla the congressos. Wlth ihe translllon from unlncorporated charity to CIO occurring duringthia fiscalyear we began thinkln8 about developin88 new logo and brand and identifled companles to help wlth thatwork in Pf24125. LooklngFoftiYard We are beginningv40rk on developing new patleni maierlals wllh a grant recelved from the BAD In Prf24125 lo support those publications and our engagementwlth the P8tlent Information Forum. who provlde 8 quallty Standard mark for patienl information. Those standards will al30 be epplied to a newwebsite. which will include moro vidéo materials a8well revised written materials. and will feature our new logo and branding. A theme of ourwork for FY 25126 will be around the development of self-advocacy skill8. In the Bijtumn of 2024. our role In the NICE assessment of avaprltinlb for8dv8nced forms of mastoGytosis was completed with their positive decision. It 18 now av8i18ble in England, Wales and Northern Ireland on the NHS as a standard medicine available. In 5coiian(J it remains a medicationiorwhich there woula need to be an In(Jlvldual Patient Treatmenl Request. We stand by, ready to play our role should Scotland 8gree to assess avapritinib for advanced systemic mas10c￿o81s. We are also continulngio develop our skills relatedto NICE processes and to understand patient experience. Recognising that a targeted thcrapy forthe indolent torm ol systemic mastocytosis (ISM) ha3 been approved In the US and in Europe and moreare in trials. we are hopefullo havethe chance to tell NICE about the experienc8 ol people viith ISM should thosetherapies be approved by rne MHRA and essessed. The work to develop a registry will also continue. wth key decisions being made about plattorm, data to be collectéd. and the undertyrng infrastructure for the project. A w811- created and run reglstry create8 0 rich envlronment of data that will allow researchers to begin to develop new insights about the nature of mast cell dlsèages. what is similar

and different across populations, what treatments havewhich effects. and which people do well overtime and which ones face addltional challenges. Such a registry can transfomi the research landscape but is also an expenslve endeavour and ensuring that it is financially viable and sustainable wiu be thework of the next fewyears. I thank everyonefortheirsupport of ourwork in the pastand lookforward to worklng together to make life betterfor all people with mast cell diseases. Jess Hob8rt, MPP, MPH Chair ol Trustees

Charlty Namè: The UK MastocytosisSupportGroup. also known as UK Masto Charlty Number 1201970 Pertod: 16 February2023to 31 March 2024 Prlncipal address: As the Charity has no premises, it can be reached through 5ts postal address: 86-90 Paul Street London EC2A4NE Summary of purpo8e8: The UK MastocytO818 Support Group ICIOI was established forthe preservation and protection of health and the reliefof need in particular by: 1. Provldlng advlce. support and information to Improve quality of life for mast cell disease patlents and their carers 2. Provlding or 8sslstln8 in the provlslon of Informatlon to the publlc about mast cell diseases 3. Supporting medical professlonals In thelr understandlng of mast ceu dlseases, theirdiagnosls, prognosis and treatment 4. Supporting rese8rch into mast cell diseases, thelr causes and the means to Improve the health and quality of life Dutcomes for those sufferingwith the ondition and promotingthe disseminatlon ol the uselul results of such research. While thls CIO was established onlyin 2023, it was created to take overtheworkofthe unlncorporated charity of the same namethat had been establishèd In 2014 land closed In 20241. and that unincorporated charity builton tlie work of the less formal support group thatwas firstformed in 2004 by Irene Wilson. The newlyformed CIO was approved bythe Charlty Commission on February16, 2023, and the old unincorpor8ted charitywas formally closed bythe Charity Commi&8ion on January 30. 2024. Stat•ment of Maln Actlvlll•8 and of Achlev•m•nts: See appended Chalr's Reporl Govemance: The UK Mastocytosis Supporr Group is registered charity number1201970, governed by the Charities Act 2006. The charity is a Charitable Incorporated Organisation registered on 16 February 2023 (Foundation model). Its onlyvoting members are itsTrustees. The UK Mastocytosis Support Group's governance is described in its constitution. The policy and operating decisions ofthe charity lie with itsTrustees. who are listed below. New trustees are appointed bythe servingtrustees. Consideringthe skills required by the board.

Flnanelal Review: The UK Mastocytosis Support Group is in a reasonablefinancial position in that it has substantial assets that have been transferred from the unincorporated charity, wlth £127,346 held atyearend FY 23124. The usual expenditures for the unincorporated charity ranged from approximately £S.IJ)O to £10,000 peryear. with no fixed staff costs and costs associated only with carrying outthe activities that move the misslon forward such as outreach, patient events. and software and servlcesfDr e.g. Communlcations, data storage and malntenance ol the charity and itswebsite. In the pastthe unincorporated charity has made several small grants to res8archers and money has also been raised in support of a registry. It is with those activities in mind thatthe charty maintains such a large balance relative to typical annual expenditures. given the 31ze of the potential outlay for such larger projects. Its prlmary sources of income are subscriptlons from the community ot people wlth mast cell di8eases. lundr8lslngeventst8ken on by members of ourcommunlty, OCC8sional large or small donations, and occasionally, honorarla for servlces provlded that relate directly to and further the m18sion of th8 charity. Somefundraising events held In FY23124were held underthe auspices ofthe old unlncorporated ch8ritywlth those funds transferred to thls CIO under an $105 order approved bythe Charlty Commission and completed on January 29, 2024. It 13 lorthat reason that theydo not appearseparately in this financial report. Butwe are grateful to our community fortheir fundraising eff orts and expectthat our community will continue to engage In such events. R•serve8 Pollcy: 1 Operating & Off ice Expense8: Thlsfund 15 used to flnance the total operating expenses of the charlty lexcludinggifts and allocations). Income to this fund is from directgifts, legacy income and any Inveslment income received. Level to be held: one year's equivalent of expense8. 2 Strategic Projects: The main contents olthis fund are strategic initiatlve8 and tralningand support of volunteers and any luture employees. The main source of income is from designated gifts and funds allocated bytheTrustee8. Level to be held: two years equivalent allocatlon Is retalned as a reserve. 3 Capltal Requlrements: This fund will be used to plan and execute c8Pital projects. The resetvewill also be used to allowfor unexpected costs. i.e. Items which are not detailed In the financial Plan but are mandatory. An example ofthis would be legal and regulatory changes. Funding will come from internal transfers from the generalfund and planning process. Level to be held: £10.000

Aecountlng Period: Thefirst accounting period {this one) runs from the date of registration of 16 February. 2023 to March 31. 2024 (approximately13.5 months) but in future will run f rom April 1 to March 31. Trustees durlng FY 202312024: Jessica Hobart (Chairl Randolph Perklns-smart (freasurerl Charlotte Lane (Secretary) The trustees declare Ihat they have approved the trustees. report above. Slgnaluro tkoBfftzr 1101/gaJr

CHARITY COMMISSION FOR ENGLAND ANO WALES Th• LN( IAostotyit•l$ SwNt Group Receipts and payments accounts CC16a F￿th pwiod from 16102r2023 3110312024 Section A Receipts and payments Unrestricted fund• Restricte(I luntl$ Endowment fund talho nMr••t £ Total funds Last yoar tothv r•r• tOlh• r••F•qt £ to tl n••rMt £ A1 R•c•l t• donalk)n8 J chartl8Db A¢thtt•s l¢onI•rn￿e $65 3,181 ARI 3.741 3.746 A2 Au•1 and In¥•tm•nt S¢rt) totsi 3.74$ A3Pa ont• G)nlèr8nces lo￿re￿h p•tbB k4glW and P081ago er & Solt71• 1n¥11ra￿S Oth•1 decl e Sub8¢rl k>n8 & 416 1JS 14• endltut 135 14• S￿) iotal 9,8ZI A4 A8••t and Inwxtmtrnt purchoJ8•. l•è t•bl•l S(A> total Tot•lp•yments 9.828 Net of receiptslpayments) AS Transfera betw•on funds A6 Cash tundi last ywond Cash funds thls year end 6.082 6.082 fj.082 6,082 C£XX R1 accounts ISSI 3110112025

Section B Statemenl of assets and liabilities at the end of the period Unrnstrided funds R•8trt¢t•d fund$ Endowmènt f unds to rn•r•st e 81 Cash funth 127.348 Totlcash 127.346 R••tri¢¢•d lund• endowm•nt lund• rn•r•t £ fund• Deiails Qxr•rt ¥•1 Oeiail Details B4 A#••t• r•taln•d for th• charlty'• tyaTn u•• Yknn du• DÈtails - za•a Sl]n8d by om orbw IruBt885 on beharf ol 81 the tNsi••s tNa Dale of 4)proval 30 vi CCXX R2 aectunl$ ISSI 3110112025