PTEN UK and Ireland Patient Group
Charity Number:1172205
Trustees, Annual Report & Financial Statements
Year ended 31 December 2023

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Ststements
For year er+ded 31 De¢ember 2023
Charity Number 1172205
Co•)tentS
Page Number
Trustees, Annual Report
Independent Examiner's Report on the Financial Statements
Financièl Statements comprising..
Statement of Financial Activities
Balance Sheet
Notes
10-12

PTEN UK and Ireland Patient Group
Trustee's Annual ReFX)rt & Financial Ststements
For year ended 31 De￿mber 2023
Charity Number 1172205
Trustees. Annual Re
The Trustees present their report with the financial ststements of the charity for the year ended 31"
December 2023. The trustees have adopted the provtsions of Accounting and Reporting by Charities..
Statements of Recommended practi￿ applicable to charth.es preparing their accounts in accordance
with the Financial Reporting Standard applicable in the UK and Republic of Ireland IFRS 1021.
OBJECTIVES AND AcrivtnES
Aims and charitable obJ¢rti¥es
The purpose of our patient group is to improve the lives of patients, pa￿ntS and carers of all ages. in
the United Kingdom and Ireland. who are affected by ra￿ PTEN genetic alterations, PTEN
Hamartoma Tumour Syndrome IPHTSI, Cowden Syndrome IC51, or Bannayan-Riley-Ruvalcaba
Syndrorne IBRRSI through better patient support, increased awareness, more accurate and accessible
information, earlier diagnosi5 and interyention, greater research into treatment and prevention, and
improved coordinakn.on of care.
Public Bènefit
In plannin8 our activities, we keep in mind the Charity Commission gtjidance on Public Benefit. We
do this by our acce55ible awareness resources to the general public and the design of our support
activities to ensure that all beneficiaries are able to acce55 SUPPOrt no matter their age. location and
economic circumstances to support our charitable objectives.
ACHIEVEMENTS AND PERFORMANCE
Our main fi)cu5 of support in 2023 was on the mentsl health of our community, as this had been an
important theme that came out of our 2022 patient day.
A National lottery 8rant was awarded to help fund our PTEN Counsellin8 Se￿iCe
Ihttps=Ilptenuki.orglcounselling-service/l. We were è150 successful in being awarded a Global Genes
grant to run 6 online group wellbeing 5e55ions. These sessions proved popular and concentrated on a
PTEN patient's journey and the Impact Df living with a rare condition, SLtch as emotions after diagnosis
and the impart of having muthple hospitsl appointments, tests and scans. The wellbeing clinics a150
focused on the mental strain for family members who betome carer5 to disabled children and how to
tell your child about their rare condition_ Both the counselling seNice and the wellness elinics were
brought to the PTEN community in collaboration with Rareminds Iwww.rarembnd5.or
and have made
a very positive impact on the wellbeing of our community.
We held another PTEN patient family day in June 2023 in Oxford. Thi5 year we decided to make it more
about face-to-facesupport. gethng PTEN families together. rather than have the day meditallyfocused.
With this in mind we booked a children's entertainer and also put on a lovely BBQ. The patient day was
a hu8e succe55 Wlth over 100 people attending the day.
As a charity we also assisted medical research studies condurted by the PTEN Research Foundation
and Éenetic counsellors. We are waib.ng for the results to be published.
Thanks again, as per every year. goes to all our trustees. volunteers. members. medical professionals
and fesearchers who continue to make the PTENUKI patient group and wider cornmunity such a
success. By workin8 tO8ether, we are making a real difference and positive impact on people's lives.

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2023
Charity Number 1172205
FINANCIAL REVIEW
Flnancial Poslilon
Thi5 year we sawthe fruits of our latK>ur in terms of fundraising. We were successful in our application
for a Nath"onal Lottery8iant I£IO.OTr)l and we also were granted £4,5(Kl by Global Genes. Our 6 runners
in the London tsndmark half marathon in April also raised just over £6.(￿ between them. In total.
our donatr'ons plus the fundraising efforts has given us income of £31.411, which is more than triple
the previous year. These funds enabled us as a charity to provide more support for our ¢ommunity,
resulting in total expenditure of £24.739.
Wè Benerated an overall Surplus of £6,672 for the year12022-1£758 Ideh'citl. This surplus is spllt
£1,187 in our Un￿SErI(ted funds and £5,485 in our restrirted funds. The 8Trnts from The National
Lottery and Global Genes were for spttific purwses and ha￿ bEen a¢¢ounted lor within our restricted
funds.
Our total funds as at 31 December 2023 ￿and at £18,03612022:E 11,3641 and is split £12.551 in
unrestricted fund5 and £5.485 in restricted funds. The detailed flnancial statemen15 are included on
pages 8 to 12.
Reserves Poll¢y
The tTU5tees are mindful of their responsibility towards the charity. the ￿SOurceS they manage and
how they have been accumulated. It is the trustees. policy to hold unrestricted general reserves
amounfjn8 to £2.l￿t0 rellecr budgeted and unexpeaed calls upon resources within the coming year.
The reserves target amount Is reviewed on an annual ba515. This tar8et was achieved as at 31
December 2023, with unrestricte(I, undesignated funds of £12,551.
We prepare a carefully consldered bud8et and cash flow for th¢ year, which are based on historical
performance and prudent estimates. We also produce a profit and loss forecast for each major
support acivity and Ca￿fUllY monitor artual performance versus t0￿Cast.
STRUaURE. GOVERNANCE AND MANAGEMENT
Constltutlon and GovemSw Documert
We are constituted as Charitable Incol￿rated OrBanisation ICIOI and our constitution governs our
operation as a charity. We were registered a5 a CIO wlth the Charity Commission on 22 March 20217.
Board of Trustees
The Board of Trustees has independent control over, and legal ￿sponSibl11fy for the charity's
management and administration. The Board's decision making process is informed by chaiity law and
its constitution. Our constitution requires a minimum of three trustees.
Durlng 2023, Ihe trustees met four times. At the siart of the year, lan Stock, our charity founder.
stepped down as charity chair after 6 years. We thank lan for his incredible contribution to our
community by both founding the charity and leading us for so many years. We have not said goodbve
to lan as he is continues to be part of the charity as è trustee. The Chalr role was during 2023
undertaken by Jack Donnelty and this passed to Peter Welch in July 2024.
Appolntment term

PTEN UK and Ireland Patient Group
Trustee'5 Annual Report & Financial Ststements
For year ended 31 December 2023
Charity Number 1172205
In selecting individuals for appointment as trusiees. the trustees must have regard to the skills,
knowledge and experience needed for the effertive admini5tratfon of the charity. In accordance with
the constitut(on appointments a￿ for an Initial term of threè years. A trustee who ha5 served for
three consecutive terms may not be reappointed for a fourth consecutrye term but may be
reappointed after an interval of at least one year.
Trustse Indv¢rfon
All trustees complete an induction programme designed to inform them aknut the charlVs
Structure. objectives, finances and decision making framework and ensure that they are fully aware
of the responsibilitie5 of bein8 a trustee. The induthon process takes the forni of a combination of
meetlngs and the provision of appropriate reading material indudln8 our constitudon, annual report
and account5 and guidance from the Charity Commissh)n.
The Trustees and thelr areas of focus for the year and up to the date of approval of the Annual
Report & FinancSal Statements were...
lan Stock- Founder trustee
Jack Donnelly lappolnted 19 January 2023. resigned 22 July 2024- Chalr durlng perlod of office)
Peter Wel¢h l appoSnted 24 July 2024 as Chalr Designate)
Ellie Collins- Markettng
Ellie Welsh- Communicatlons (appointed 24 Juty 20241
Piyanka Tibarewal- Research
Colette Knight- Care & Support
Dr Katherine Lachlan- Me(lical Advlsor
John Pemberton- Technology
Kelly Kearley- Administratr'on & Fundraising
Mike Collins- Financè (until 31 De￿rnber 2023}
REFERENCE AND ADMINSTRATION DEfAILS
Prlnclpal Addre55
11 Whinchat Close
Hartley Whitney
Hook
RG18
Bankefs
HSBC UK
Independent Examiner
Melanie Crooks Associates Limited
Bellfi"eld House
33 Stafford Road
Bloxwich
W53 3NJ
Declaratlon
The trustees declare that they have approved the trustees. report above on 10 October 2024

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Ststements
For year ended 31 December 2023
Charity Number 1172205
Signed on behalf of the charl￿S trustees bv..
Full name.. lan Stock
Posidon.. Trustee
Oate: 10 October 2024

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2023
Charity Number 1172205
Independent Examlners Report to the Trustees of PTEN UK and Ireland Patient Group- Charity
number 1172205 l ￿he ChariVI
I report to the Charity trustees on my examination of the accounts for the Charity for the year ended
31 December 2023 which a￿ set out on pages 8 to 12.
Responsibilltles and basi5 of report
As the trustee5 of the Charity. you are responsible for the prepaTrtion of the accounts in accordance
with the requirement5 of the Charities Att 20111-thÈ 2011 Act").
I report in respert of my examinaiion of the Charivs accourrts carried out under sect?on 145 of the
2011 Art and in carrying my examination. I have followed the applicable Di￿rtionS gi￿n by the
Charity Commission under section 14515llbl of the 2011Art.
Independent examlnerfs ststement
I have completed my examination. I ionfirm that no material matters have come to my attention in
connection with the examination which gives me cause to believe that in, any material respert=
Accounting records were not kept in accordan￿ wtth section 130 of the 2011 Act.. or.
The accounts do not accord with the accounting records.
The accounts do not comply wrih the applicable requirements con￿MIng the fomi and
content of accounts set out in the Charities l Accounts and Reportsl Regulations 2008 other
than any requirement that the account% give a -true and fair" view. which 15 not a matter
conSide￿d as part of an independent examination.
The trustee's annual ￿port 15 not consistent with the accounts
I have no concerns and have no other matters in connettion wrth the examination to which attention
should be drawn in orderto enable a proper understanding of the accounts to be reached.
fflji
Melanie Crooks
Melanle Crooks Associates Limited
Bellfield House
33 Stsfford Road
Bloxwich
West Midlands
WS3 3NI
Date.. IG. 10.10%

PTEN UK and Ireland Patient Group
Trusree'5 Annual Report & Financial Statements
For year ended 31 December 2023
Charity Number 1172205
Statement of FIn￿(la1 Acthiities
2023
2023
Unrestricted Restricied
Funds
Funds
2023
Total
Funds
2022
Total
Funds
Income and Endowments from:
Dirett Donations
Fundraisin8 Donations
Grants receivable
Sundry income
Total Income
9.739
7.266
9.739
7,266
14376
30
I.IZ3
820
7.415
96
9,454
14,376
17,035
14,376
31AII
ExwndStur• on .
Rt7islng Fund5
Charitoble ActiVit￿$.-
Care & Support
Patient Day costs
Conferences & Training
Charity Mana8ement
Insurance
Bank & Just Giving Cost5
Subscriptions
Independent Examinatlon
Sundry expenditure
Total Expendlture
2,517
2,517
1,164
10.215
10.215
4,537
4,537
662
4.643
199
5.333
213
282
192
5.333
213
282
192
4,CKJO
146
500
14.524
10,215
24.739 10,212
Net IncomellExpenditure)
Transfers between funds
Net movement Sn lunds
Total funds brought forward
Total funds carrled forward
2,511
11.3241
1.187
11.364
12,551
4,161
1.324
5.485
6,672
17581
6,672
17581
11.364 12,122
18.036
11.364

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2023
Charity Number 1172205
Balance Sheet
2023
2022
Note
Debtots
Cash at bank
Creditors amounts f•lling due within one year
Totsl Net A55ets
1.727
23,271
11,764
Represented by..
Unrestricted Funds
12.551
11.364
Restrirted Funds
Total Funds
li
The notes I to 9 form part of these flnandal statements. The
flnanclal statements were approved by the trustees on 10
October 2024 and slgned by..
J8a- 1¥thg
lan Stock (Trustee)
Kelly Kearley (Trusteel

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Ststements
For year ended 31 December 2023
Charity Number 1172205
Notes to the Flnancial Statements
l.Basls of Accourtin8
The ftnancial statement5 have been prepared in accordance with the Charities Art 20211, applicable arcountin8
standards IFRS1021 and Charities SORP and under historical cost accounting.
The financial statements comprise of the Statement of Financial Activities. Balance Sheet and associated Notes.
The Charitable Incorporate(1 Organisation meets the definition of a public benefit entity under FRSIO2.
2.Goln8 CO￿tTn
The financial statements have been prepared on a goin8 concern basi5 as the trustees believe that no material
uncertainties exist.
The trustees have considered the level of funds held and the expected level of Income and expenditure for 12
months from authorisin8 these flnancial statements.
3.Income
Income Is Included in the Statement of Financlal Activlties when the charity is legally entitled to it,
ultimate receipt is probable and the amount to be recognlsed can be quantified with reasonable
accuracy.
Voluntary Income In the form of donations and fundraisln8 Is recognlsed when the ¢ash is recelved
or the financial year that the income is stated to relate to.
Grants are reco8nised on a receivable ba54s when the charity has probable and measurable
entitlement to the income li.e. The conditions for its award have been satisfied).
Where the use of the income has been restrlcted In accordance wlth the donorlgrantee wishes the
Income Is credlted to an approprfate fund until it can be spent for the purp05e5 for whlch it is given.
4.EMpendlture
Liabilith"es are reco8nised as soon as there Is a legal or constructive obligation commith'ng tht tharity to pay
our resources.
S.Funds
GeneralFund
The general fund is the charity's unre5trirted, undesi8nated fund available for any the charSty's
purposes without restriction.
Oeslqnoted Funds
Designated funds art unre5trirted in nature and created by the charity's Trustees for a specific
purpose.
Designated funds may be un designated at any time by the chartty's Trustees.
Re$tri¢tedFunds
Restricted funds ielate io income received **A)ich are ￿$tricted bythe donor orgrantee for 5P8cific
purposes wltnin the overall aims ot tt)e organ15ation.
These lun(Js are use¢J in accordance ￿ the Specific purposes.
6.Debtors and Credltows
io

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Ststements
For year ended 31 Decembèr 2023
Charity Number 1172205
2023
2022
D8btors."
Grants recefvable
Credltors..
Accruals
Deferred 8rani income
1,727
400
400
7.Movement In Funds
EXpMd￿Ure B•lonce •t
31.12.2023
1.1.2023
NatSonal Lottery-CounselNn8 5eryice
Global Genes- Mental Health SUp￿rn
io.coj
4,376
14.376
14.5151
15,7001
110,2151
S,485
1.324
1,324
5.485
Unrn$trktedFU￿.
General
11,364
17,035
114.5241 11,3241
12.SS1
Totsl Funth
liJ64
31.411
24.7a91
18.036
Transfers b•tween lunds were •s follow5
UnrnSt￿ted R•strkted
G•neral
General fund io Global Genes fund
1.324
Thls represents the transfer of lunds io support the Mental Heahh Support programme.
.Comparntive Statement ol Flnandal Actt¥ltles
As the only fund in use durrng the year ended 31 December 2022. was the general unrestricted lund,
a comparalive Statement of Financial Actlvftles In ad(lition
to that within the 2023 Statement of Financial Artivities has not been reproduced in the notes to the
financial statements.
9.Trustees and Related Party Transactlons
Thé charity mointsined insurance for the trustees thfO418hout the finan¢l•l year ended 31 Oecember
2023 and suth indemnity insurance was in place at the date of
approval of these financial statements. For the yeaf ended 31 December 2023. the premium cost for
indemnity insurance was £ 36 and the cover was £250.000.
li

PTEN UK and Ireland PaD"ent Group
Trustee's Annual Report & Financial Ststement5
For year ended 31 December 2023
Chartty Number 1172205
During the year. no Trustees received renumeration for their role as TnAstee12022..£nill. Trustees
were reimbursed for out of pockei expenses. totalling £1.7(Xl for 3 trustees.
During the year. as allowèd undèr the constituti¢)n. a Trusteè l K Kèarleyl undertook the duties of thè
charity manager under a contractuol agreement.
The arnount chai8eable under thi5 conirartual aBreement was £4.66712022: £4,￿1. An amount of
£666 was outstanding as the 31 DecÈmber 202312022'.£4CK)I.
12