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 & Solt*71•
1n¥11ra￿S
Oth•1 d*ecl 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
Tot*lcash
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