PTEN UK and Ireland Patient Group
Charity Number:1172205
Trustees, Annual Report & Financial Statements
Year ended 31 December 2024

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
Contents
Page Number
Tru5tees' Annual Report
Independent Examinerfs Report on the Financial Statement5
Financial Ststements comprising:
Statement of Financial Activities
Balance Sheet
Notes
10-13

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financlal Statements
For year ended 31 December 2024
Charity Number 1172205
Trustees. Annual Re
ort
The Trustees present their report with the financial statements of the charity for the year ended 31
December 2024. The trustees have adopted the provisions of Accounting and Reporting by Charities:
Statements of Recommended Practice applicable to charities preparing their accounts in accordance
with the Financial Reporting Standard applicable in the UK and Republic of Ireland {FRS 1021.
OBJECTIVES ANO ACTIVITIES
Aims and charltable objectives
The purpose of our patient group 15 to improve the lives of patients. parents and carers of all ages, in
the United Kingdom and Ireland, who are affected by rare PTEN genetic alterations, PTEN
Hamartoma Tumour Syndrome IPHTS), Cowden Syndrome ICS), or Bannayan-Riley-Ruvalcaba
Syndrome {BRRSI through better patient 5UPPOrt, increased awareness, more accurate and accessible
information, earlier diagnosis and intervention, greater research into treatment and prevention, and
improved coordination of care.
Publlc Benefit
In planning our activities, we keep in mind the Charity Commission guidance on Public Benefit. We
do this by our acce55ible awareness resources to the 8eneral pub5ic and the design of our support
activitie5 to ensure that all beneficiaries are able to access support no matter their age, location and
economic circumstance5 to support our charitable objectives.
ACHIEVEMENTS AND PERFORMANCE
In 2024 our focus was on continuing to provide vital emotional, practical. and financial support to our
community while also raising awareness of PTEN.
Due to the economic climate we decided to award a "Cost of Living. grdnt to our community in
February 2024, which allowed u5 to distribute 25 individual grants of £150 each to families most in
need. These grants supported essential equipment in the home, mentsl health days such as family
trips, and technology such as iPads to help with learning and communication.
Our PTEN Counselling Service remained a cornerstone of support, and thanksto a new National Lottery
grant of £20,(X)O over two years IAugust 2024 - Au8USt 2026), we are able to ensure its continuation.
Alongside this, we launched our online PTENUKI One Lotto, enablin8 SilPPOrters to purchase tickets to
help raise funds for our work in an accessible and sustainable way.
We also continued to host our monthly PTEN Power Hours, providing a platform for rnedical
professionals to connect with our community and share expertise on tOPiCS Such as thyroid health,
imfnune deficiencies, and the wider impact of PTEN. We extended this support to sibling5 of patients
by collaborating with the charity Sibs, recognising the importance of including the whole family in our
care. We hosted 11 online workshops in total across the year.
Awareness remained a key priority. The PipgenArtProject combined science and creativity to highlight
the impact of rdre genetic conditions. Our Charity Manager, Kelly Kearley, represented the PTEN
community on the Medics 4 R¢7re, Rareminds, and On One Condition podcasts. ensuring the PTEN voice
reached wider audiences. Kelly also co-authored the Positively Rare book, which PTEN UK & Ireland

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Ststements
For year ended 31 December 2024
Charity Number 1172205
was proud to 5UPPOrt. The book brought together stories from across the rare disease community,
giving a powerful platform to lived experiences and helping raise awareness of the challengesfaced by
families with rare conditions,
We were also delighted to become member5 of NORD INational Organization for Rare Disorders).
Joining NORD stren8thens our international connections. allows us to share knowledge and
resources with other rare disease groups, and ensures that the PTEN community in the UK and
Ireland has a voice within a wider global network advocating for research, policy change, and
improved support for those affected by rare conditions.
We are proud of the progress made in 2024 and remain committed to supporting families living with
PTEN through tinancial help, counselling, advocacy, and awareness initiative5. As always, we extend
our thanks to our trustees, volunteers, members, medical professiona15, and research partners who
make this work possible.
FINANCIAL REVIEW
Flnancial Posltion
This year we Saw the fruits of our labour in terms of fundraising. We were successful in our application
for further support for our PTEN counsellin8 service from the National Lottery with a two year grant
1£20,0001 which will help u5 run the serdice until August 2026. In total, our donations plus the
fundraising efforts has Eiven u5 income of £47,904 which is an extra £16,000 from the previous year.
These funds enabled us as a charity to provide more support for our community, resulting in totsl
expenditure of £29,236.
We generated an overall surplus of £18,668 for the year (2023: £6,672 surplus). This surplus is split
£10,653 in our unrestricted funds and £8,015 in our restricted funds12023: £1,187 unrestricted and
£5,485 restricted funds). The grant from The National Lottery was for the specific purpose of
counselling and has been accounted for within our restricted funds.
Our total funds as at 31 December 2024 stand at £36,70412023:£ 18,036) and is split £23,204 in
unrestricted funds and £13,500 in restricted funds (2023: £12,551 unrestricted and £5,458
restricted). The detailed financial statements are included on pages 8 to 13.
Reserves Pollcy
The trustee5 are mindful of their responsibility towards the charity, the resources they manage and
how they have been accumulated. It is the trustees. policy to hold unrestricted general reserves
amounting to £2,000 to reflect budgeted and unexpected calls upon resources within the coming year.
The reserves target amount is reviewed on an annual basis. This target was achieved as at 31
December 2024, with unrestricted, undesignated funds of £23,204 {2023. £12,551).
We prepare a carefully considered budget and cash flow for the year, which are based on historical
performance and prudent estimates. We also produce a profit and loss forecast for each major
support activity and carefully monitor actual performance versus forecast.

PTEN UK and Sreland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
STRucfuRE. GOVERNANCE AND MANAGEMENT
Constitution and Governing Document
We are constituted as Charitable Incorporated Organisation ICIOI and our constitution governs our
operation as a charity. We were registered as a CIO with the Charity Commission on 22 March 20217.
Board of Trustees
The Board of Trustees has independent control over. and legal responsibility for the charl￿S
management and administration. The Board's decision making process is informed by charity law
and its constitution. Our constitution requires a minimum of three trustees.
During 2024, the trustees met four times (every quarterl. This year brought new leadership and
expertlse to our trustee board. We welcomed Pete Welch as our new Chair in July 2024, bringing both
professional insight and personal passion as a PTEN parent, and Eleanor Welsh. a clinical geneticist, as
our new Care and Support Trustee.
Appolntment temi
In selecting individuals for appointment as trustees, the trustees must have regard to the skills,
knowledge and experience needed for the effective administration of the charity. In accordance wtth
the constitution appointments are for an initial term of three years. A trustee who ha5 served for
three consecutive terms may not be reappointed for a fourth consecutive term but may be
reappointed after an interval of at least one year.
Trustee Inductlon
All trustees complete an induction programme desi8ned to inform them about the charitls
structure, objectives, finances and decision making framework and ensure that they are fully aware
of the responsibilities of being a trustee. The induction process tskes the form of a combination of
meetings and the provision of appropriate reading material including our constitution. annual report
and accounts and guidance from the Charity Commission.
The Trustees and their areas of focus for the year and up to the date of approval of the Annual
Report & Financial Statements were:_
lan Stock- Founder trustee
Jack Donnelly {appointed 19 January 2023, resigned 22 July 20241
Peter Welch ( appointed 24 July 2024)
Ellie Collins- Marketing and Communications
Colette Knight- Care & Support
Eleanor Welsh- Care and Support (appointed 24 Juty 2024)
Priyanka Tibarewal- Research
Dr Katherine Lachlan - Medical Advi50r
John Pemberton- Technology (resigned January 19th 2024)
Kelly Kearley-Admtnistration & Fundraising

PTEN UK and Ireland Patient Group.
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
REFERENCE AND ADMINSTRATION DETAILS
Principal Address
11 Whinchat Close
Hartley Whitney
Hook
RG18
Bankers
HSBC UK
Independent Examlner
Melanie Crooks Associates Limited
Bellfield House
33 Stafford Road
Bloxwich
W53 3NJ
Declaratlon
The trustees declare that they have approved the trustees, report above on 21 October 2025
Signed on behalf of the charity's trustees bv..
Full Name.. Peterwelch
Position: Chair of Trustees
Date: 21 October 2025

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
Independent Examiners Report to the Trustees of PTEN UK and Ireland Patient Group - Charity
number 1172205 ( "the Charity")
I report to the Charity trustees on my examination of the accounts for the Charity for the year ended
31 December 2024 which are set out on pages 8 to 13.
Responsibilities and basis of report
As the trustees of the Charity, you are responsible for the preparation of the accounts in accordance
with the requirement5 of the Charities Act 2011 ("the 2011 Act'l.
I report in respect of my examination of the Charity's accounts carried out under Section 145 of the
2011 Act and in carrying out my examination, I have followed the applicable Directions 8iven by the
Charity Commission under section 14515llbl of the 2011Act.
Independent examiner's statement
I have completed my examination. I confirm that no material matters have come to my attention in
connection with the examination which gives me cause to believe that in, any material respect:
Accounting records were not kept in accordance with section 130 of the 2011 Act: or.
The accounts do not accord with the accounting record5.
The accounts do not comply with the applicable requirements concerning the form and
content of accounts set out in the Charities l Accounts and Reportsl Regulations 2008 other
than any requirement that the accounts give a "true and fair" view, which is not a matter
considered as part of an independent examination.
The trustee's annual report is not consistent with the accounts
I have no concerns and have no other matters in connection with the examination to which attention
should be drawn in order to enable a proper understanding of the accounts to be reached.
r7u /&J
Melanie Crooks
Melanie Crooks Associates Limlted
Bellfi'eld House
33 Stafford Road
Bloxwich
West Midlands
WS3 3NJ
Date:
28.10.2015

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
Statement of Financial Activities
2024
2024
Unrestricted Restricted
Funds
Funds
2024
Total
Funds
2023
Total
Funds
Income and Endowments from .
Direct Donations
Gift Aid Recoverable
Fundraising Donations
Fundraisin8 Lottery
Grant5 receivable
Sundry income
Total Income
13,059
289
13,392
414
750
13.059
289
13.392
414
9,739
7,266
20,000
20,750
14,376
30
27,904
20,000
47.904 31,411
Expendlture on .
Roi5ing Funds
Charitable Activities..
Awarene55 Raising
Care & Support
Patient Day costs
Conferences & Tra+nin8
Charity Management
Insurance
Bank & Just Givin8 Cost5
Subscriptions
Independent Examination
Depreciation
Sundry expenditure
Total Expenditure
766
766
2,517
2.058
4,393
2.058
16,378 10,215
4,537
662
5,333
213
282
192
soo
11,985
259
8,000
213
2S9
213
294
266
400
185
417
288
29.236 24,739
294
266
185
417
17,2SI
11,985
Net Income/(Expendlture)
Transfers between funds
Net movement In funds
Total funds brought fOr￿ard
Total funds carried forward
10,653
8,015
18.668
6.672
10.653
12.551
23.204
8,015
5,485
13,SOO
18.668
18,036
36.704
{7581
11,364
18,036

PTEN UK andlreland Patient'Group
Trustee's Annual Report & Financial Statement5
For year ended 31 December 2024
Charitv Number 1172205
Balance ShÈet
2024
2023
Note
Tangible Fixed Assets
Debtors
Cash at bank
Credltors amount5 falling due wSthin one year
Total Net Assets
369
289
1,727
42,041 23,271
15,995) {400)
36,704 18,036
Reptesented by..
Unrestricted Funds
Restricted Funds
Total Funds
23.204 12,551
13,500
5,485
36,704 18,036
The notes I to 10 form part of these flnancial statements.
The financlal statements were approved by the trustees on 21
October 2025 and signed by:
NAME Peter Welch {Trustee
Kelly Kearley ITru5teel

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
Notes to the Finandal Statements
LBasis of Accountlng
The financial statements have been prepared in accordance with the Charities Act 20211. applicable accounting
standards (FRS102) 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 Incorporated Organisation meets the definition of a public benefit entity under FRSIO2.
2.Golng Concern
The financial statements have been prepared on a goin8 concern basis a5 the trustees believe that no material
uncertaintie5 exist.
The trustees have considered the level of funds held and the expected level of income and expenditure for 12
monihs from authorising these financial statements.
3.Income
Income is included in the Statement of Financial Activities when the charity is legally entitled to it,
ultimate receipt is probable and the amount to be reco8nised can be quantified with reasonable
accuracy.
Voluntary income in the form of donations and fundraising is recognised when the cash is received
or the financial yearthat the income is stated to relate to.
Grants are recognised on a receivable basis when the charity has probable and measurable
entitlement to the income {i.e. The conditions for its award have been satisfied).
Where the use of the income has been restricted in accordance with the donor/grantee wishes the
income is credited to an appropriate fund until it can be Spent for the purposes for which it is 8iven.
4.Expenditure
Liabilities are recognised as soon as there is a legal or constructive obligation committing the charity to pay
our resources.
5.Funds
General Fund
The general fund is the charitvs unrestricted, undesignated fund available for any the charity's
purposes without restriction.
Designoted Funds
Designated fund5 are unrestricted in nature and created by the charity's Trustees for a specific
purpose.
Designated funds may be un designated at any time by the charity's Trustees.
Restricted Funds
Restricted funds relate to income received which are restricted by the donor or grantee for specific
purposes within the overall aims of the organisation.
These funds are used in accordance with the specific purposes.
10

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
6. Tanglble fixed assets
Tangible fixed asset5 are initially recognised al cost, or for donated assets, at a reasonable estimate of
their value on receipt.
Depreciation is provided on all fixed a5setS, to write off the cost on a straight line basis over theif
expected useful life. For computer equipment this is at the rate of 33% per annum.
Equipment
Cost:
At 1.1.2024
Addition in year
At 31.12.2024
554
554
Accumulated Depreclation:
At 1.1.2024
Charge for year
At 31.12.2024
(185)
(185)
369
Net Book Value at 31.12.2024
Net Book Value at 31.12.2023
7.Debtors and Credltors
2024
2023
Debtors..
HMRC Gift Aid Recoverable
Grants receivable
1,727
1,727
Z89
Creditors..
Accruals
Deferred grant income
995
1,962
5.995
6.962
li

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 31 December 2024
Charity Number 1172205
8.Movement In Funds
Baknce at lrtcome
Tfansler Bal￿re at
1.1.2024
31.12.2024
Resth'rted Fund5.'
National Lottery -Counselling Service
5.485
20,000
20,OCKI
111.985)
{11.985}
13,500
13.500
5,485
Unre5trirted Funds..
General
12.551
27,904
(17,2511
23,204
Total Funds
18,036
47,904
129236)
36.704
Prior yeorfigures..
Baknce at
Income
Expendlt4we Trnn5fer B•14n¢e at
31.12.2023
1.1.2023
Restrirted Funds..
National Lottery -Counsellir8 Service
Global Gene5 - Mental Health Support
lo,￿0
4,376
14,376
(4.515}
(5.7001
(10,215}
5,485
1,324
1,324
5,485
Unrestrlrted Funds..
General
11,364
17,035
114.524) {1,324}
12,SSI
Total Fund5
11,364
31MII
(24.739)
18.036
Transfers between funds were as follows
Unrestrfcted Restrlcted
General
General fund to Global Genes fund
{1,324}
1,324
This represents the transfer of funds to SUPPOrt the Mental Health Support programme.
9.Trustees and Related Party Tran&irtions
The charity maintained insurance for the trustees throughout the financial year ended 31 December
2024 and such indemnity insurance wa5 in place at the date of
approval of these financial statements. For the year ended 31 December 2024, the premium cost for
indemnity insurance was £213 and the cover was £250,000.
12

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statements
For year ended 310ecember 2024
Charity Number 1172205
During the year, no Trustees received renurneration for their role a5 Trustee12023:£nil}. Trustees
were reimbursed for out of pocket expense5, totalling £1,221 for 2 trustees12023: £1,700 for 3
trustees).
During the year, as allowed under the constitution, a Trustee ( K Kearley) undertook the duties of the
charity manager under a contractual agreement.
The amount chargeable under this contractual agreement was £8,000 { 2023: £4,667. An amount of
£nil was outstanding as the 31 Oecember 2024 (2023:£666).
A150 during the year, as allowed under the constitution, a Trustee {E Collins) undertook social media
and communications duties by contractual arrangement. The amount chargeable under this
arrangement was £330 and no amount was outstanding at 31 December 2024.
10.Comparative Statement of Financial Activlties
2023
2023
2023
Unrestricted Restricted Total
Funds
Funds
Funds
2022
Total
Funds
Income and Endowments from .
Direct Donations
Fundraising Donations
Grants receivable
Sundry income
Total Income
9,739
7.266
9,739
7.266
14.376
1,123
820
7,415
96
9,454
14,376
30
17,035
14,376
31.411
Expenditure on .
Raising Funds
Charitable Activities."
Care & Support
Patient Day costs
Conferences & Training
Charity Management
Insurance
Bank & Just Giving Costs
Subscriptions
Independent Examination
Sundry expenditure
Total Expenditure
2.517
2.517
1,164
10,215
10.215
4.537
662
4,537
662
4,643
199
5,333
213
282
5.333
213
282
192
146
192
500
288
500
288
14.524
10,215
24.739 10,212
Net Incomel(Expendlture)
Transfers between funds
Net movement In funds
Total funds brought forward
Total funds carried forward
2,511
(1,324)
1,187
11,364
12.551
4,161
1,324
5,485
6.672
(758)
6.672
(758)
11.364
12.122
18.036 11,364
5.485
13

PTEN UK and Ireland Patient Group
Trustee's Annual Report & Financial Statement5
For year ended 31 December 2024
Charity Number 1172205
14