Enter SC No. below
APPENDIX 2
Enter charity name below
**SC046480**
|||||**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|**Receipts andpayments accounts**|||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
||||||||Period start date||||||||||Period end date|Period end date|||||||
|||**For the period**
**from**|||01
Day|||May||||2024
Year2024||**to**|Day
30||April||||2025
**2025**||||
|**Section A Statement of receipts and payments**|||||||||||||||||||||||||
|||**Unrestricted**
**funds**|||**Restricted**
**funds**|||||**Expendable**
**endowment**
**funds**|||||**Permanent**
**endowment**
**funds**||||**Total funds**
**current period**||||**Total funds last**
**period**|**Total funds last**|
|||**to nearest £**|**to nearest £**||**to nearest £**|**to nearest £**||||**to nearest £**|||||**to nearest £**||||**to nearest £**||**to nearest £**||**to nearest £**|**to nearest £**|
|**A1 Receipts**|||||||||||||||||||||||||
|Donations|||||||||||||||||||**16**|**16**|**16,605**||**4,546**||
|Legacies|||||||||||||||||||**-**|**-**|**-**||||
|Grants|||||||||||||||||||**-**|**-**|**-**||||
|Receipts from fundraisingactivities|||||||||||||||||||**-**|**-**|**-**||||
|Gross tradingreceipts|||||||||||||||||||**-**|**-**|**-**||**1,285**||
|Income from investments other than|||||||||||||||||||||||||
|land and buildings|||||||||||||||||||**-**|**-**|**-**||||
|Rents from land & buildings|||||||||||||||||||**-**|**-**|**-**||||
|Gross receipts from other charitable|||||||||||||||||||||||||
|activities|||||||||||||||||||**-**|**-**|**-**||**684**|**684**|
||||||||||||||||||||**-**|**-**|**-**||||
|**_A1 Sub total_**|**_A1 Sub total_**|**-**|**-**||**-**|**-**|**-**|**-**||**-**|**-**|**-**|||**-**|**-**|**-**||**16,605**|**16,605**|**16,605**||**6,515**||
|**A2 Receipts from asset &**|||||||||||||||||||||||||
|**investment sales**|||||||||||||||||||||||||
|Proceeds from sale of fixed assets
Proceeds from sale of investments
**_A2 Sub total_ -**
**-**
**-**
**_Total receipts_ -**
**-**
**-**
~~—~~|||||||||||||||**-**
**-**|**-**
**-**|**-**
**-**||**-**
**-**
**-**
**16,605**|**-**
**-**
**-**
**16,605**|**-**
**-**
**-**
**16,605**||**-**
**6,515**||
|**A3 Payments**|||||||||||||||||||||||||
|Expenses for fundraising activities|||||||||||||||||||**331**|**331**|**331**||**475**|**475**|
|Gross trading payments|||||||||||||||||||**-**|**-**|**-**||||
|Investment management costs|||||||||||||||||||**-**|**-**|**-**||||
|Payments relating directly to charitable|Payments relating directly to charitable||||||||||||||||||||||||
|activities|||||||||||||||||||**54**|**54**|**54,216**||**6,008**||
|Grants and donations|||||||||||||||||||||||||
||||||||||||||||||||**-**|**-**|**-**||||
|Governance costs:|||||||||||||||||||||||||
||||||||||||||||||||**-**|**-**|**-**||||
|Audit / independent examination|||||||||||||||||||**-**|**-**|**-**||||
|Preparation of annual accounts|||||||||||||||||||**-**|**-**|**-**||||
|Legal costs|||||||||||||||||||**-**|**-**|**-**||||
|Other|Other|Other|||||||||||||||||||||||
||||||||||||||||||||**-**|**-**|**-**||||
||||||||||||||||||||**-**|**-**|**-**||||
|**_A3 Sub total_ **||**-**|**-**||**-**|**-**|**-**|**-**||**-**|**-**|**-**|||**-**|**-**|**-**||**54,547**|**54,547**|**54,547**||**6,483**||
|**A4 Payments relating to asset and**|||||||||||||||||||||||||
|**investment movements**|||||||||||||||||||||||||
|Purchases of fixed assets
Purchase of investments
**_A4 Sub total_ -**
**-**
**-**
**_Total payments_ -**
**-**
**-**
~~————~~|||||||||||||||**-**
**-**|**-**
**-**|**-**
**-**||**-**
**-**
**-**
**54,547**|**-**
**-**
**-**
**54,547**|**-**
**-**
**-**
**54,547**||**-**
**6,483**||
|**_Net receipts / (payments)_**
**A5 Transfers to / (from) funds**
**_Surplus / (deficit) for year_**|**-**
**-**
**-**
**-**
**Cross Add Error**
**32**
**-**
**-**
**-**
**-**
**-**
**37,942)**
**(**
**32**
~~——————~~||||||||||||||||||||||||
-|~—s«éPeriodstartdate
## APPENDIX 1
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Office of the Scottish Charity Regulator
## Reference and administration details
Charity name Pachyonychia Congenita Project Europe by Registered charity number $C046480
| Postcode mmm
Names of the charity trustees on date of approval of Trustees’ Annual Report
Trustee Dates acted if ws 2 name Office (if any) not for whole vear (or body) entitled to y appoint trustee (if any) 1 Executive Trustee PC Project Europe Board 2 p PC Project Trustee P PC Project 3 || Independent Trustee P PC Project Europe Board 4 || Independent Trustee Po PC Project Europe Board 5 nn a i QO i a 1 a 2 1 1 £ a A 1 9
APPENDIX 1
## Reference and administration details
Names of all other charity trustees during the period, if any, (for example, those who resigned part way through the financial period)
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‘Name== ates acted if not for whole year
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## Structure, governance and management
Type of governing document
Pachyonychia Congenita Project Europe (PCPE) is governed by its Trustees in accordance with its Constitution.
The Constitution sets out:
## Trustee recruitment and appointment
e the type of organisation PCPE is, its Scottish Principal Office, purposes, powers, liability, general structure and how it is administered; e details of its members including qualification for membership, expulsion, decision-making; arrangements for keeping a register of members; e details of how its Trustees are appointed, re-elected and retire. The Constitution also sets out their general duties, code of conduct and decisionmaking powers and sets out procedures for calling and holding meetings. The maximum number of Charity Trustees is 7. At any given time; no more than 2 Trustees may be PC Project Trustees; no more than 1 Trustee may be an Executive Trustee; and no more than 4 Trustees may be Independent Trustees. The minimum number of Trustees is 3, and at any given time a majority of the Trustees in office must be non-PC Project Trustees. PC Project Trustees are appointed by Pachyonychia Congenita Project, a public charity incorporated and registered in the USA.
The Executive Trustee and Independent Trustees are appointed by the PCPE Board.
|Objectives and activities|||
|---|---|---|
|||||
|Charitable purposes|1.Toadvance the education and health ofsufferers ofpachyonychia congenita (PC)||
||and related disorders by promoting study, research and investigations into||
||treatments and a cure for PC and related disorders, improving knowledge,||
||prevention, diagnosis and treatment; supporting sufferers; providing access to||
||genetic testing and registration ofmembers; organising and encouraging a||
||community ofprofessionals to collaborate in finding effective treatments for PC and||
||related disorders.||
||2. To provide reliefto sufferers ofPC and related disorders through the provision of||
||care, support and practical assistance and assist sufferers to live better, more||
||fulfilled lives including greater social inclusion.||
|Summary ofthe main activities|Ongoing maintenance ofthe PC registry, enrolment ofnew patients and telephone||
|in relation tothese objects|clinical consultations for patients with expert dermatologists. Contributing to articles||
||published in scientificjournals including articles related to research and diagnosis of||
||new treatments.||
||Disseminating information to the PC patient and scientific communities by means of||
||townhall meetings, presentations and posters at international scientific meetings and||
||through newsletters and the ongoing development ofa PC website.||
||Provision of patient support including prompt replies to patient related queries,||
||advice on howto care for their condition and providing supporting letterswhen||
||patients are applying for disability benefits.||
||DrivingforwardresearchintoeffectivetreatmentsforPC.||
## APPENDIX 1
## Achievements and performance
2
Summary of the main achievements of | Provided free genetic testing to those enrolled in the International PC Research the charity during the financial period Registry and supported patients through calls, social media and emails. Utilising, through email and social media, Patient Advocates that were trained to educate, inspire and involve advocates in their own communities. Organised the three-day Patient Support Meeting in Lisbon, Portugal, with over 102 attendees from 13 countries. Seventeen travel scholarships were provided to assist financially needy patients in attending the meeting. In addition to the regular patient support meeting schedule, some of our patients and physicians participated in a unique exercise to develop a tool for clinicians to assess PC severity in patients, with the goal of improving future clinical trials for PC therapeutics. Participated with international experts to reclassify ichthyosis and palmoplantar keratodermas. This group of 18 experts and two representatives from patient organisations spent three intense workdays in discussion and collaboration. Contributed to a monthly newsletter to PC patients providing details of: upcoming patient support meetings; issues discussed at meetings; and fundraising activities as well as tips on caring for PC.
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|---|---|---|---|---|---|---|---|---|---|---|---|---|
|Monitoring|progress|in|research|studies|related|to|PC|and|other|rare|keratin|
|disorders|and|clinical|trials|involving|PC|patients|and|disseminating|this|
|information|to|the|PC|community.|
|See|also|Publications|in|other|optional|information|page|4.|
|Financial|review|
|Brief statement|of the|charity’s|policy|| Any accumulated|reserves|will|be|used|to|advance|the aims and|purposes|
|on|reserves|of PC|Project|Europe|to|the|benefit|of those|suffering|from|Pachyonychia|
|Congenita|and|related|diseases.|
|Details|of any|deficit|Not|applicable.|
|Donated|facilities|and|services|(if any)|||Not|applicable.|
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## APPENDIX 1
3
## Other optional information
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Publications
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## Declaration
The trustees declare that they have approved the trustees’ report above.
Signed on behalf of the charity’s trustees
## Signature(s)
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Full name(s)
Position (e.g. Chair)
Date 18.01.26
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4
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: APPENDIX 3
oa’ al alb
Scottish Charity Regulator
- Independent examiner’s reportonthe accounts ww
Report to the | Charity name i, dt
: trustees/members of fochworyclia Conaer‘ bn Rr cb evircne for : A
Registered charity SC 04-€496 | | Lieb
number; eee ca ee ee : ie
Onthe accounts ofthe, —~Periodstartdate ae Period end date _ a?
charity forthe period | Day =| Month | Year i Dey Month Year _
| ie to
iO. OS |202¢ 40 0¢ | 2028S
a bs Re. Ries = ml : : : z 7 | 2 = ¥
Respective The charity’s trustees are responsible for the preparation of the accounts in accordance
responsibilities Of | with the terms of the Charities and Trustee Investment (Scotland) 2005 Act and the
trustees and examiner Charities Accounts (Scotland) Regulations 2006 (as amended). The charity trustees
|1 consider that the audit requirement of Regulation 10(1) (d) of the Accounts Regulations
does not apply. It is my responsibility to examine the accounts as required under section
_ 44(1) (c) of the Act and to state whether particular matters have come to my attention.
Basis of independent My examination is carried out in accordance with Regulation 11 of the 2006 Accounts
examiner’s statement Regulations. An examination includes a review of the accounting records kept by the
charity and a comparison of the accounts presented with those records. It also includes
consideration of any unusual items or disclosures in the accounts and seeks
explanations from the trustees concerning any such matters. The procedures undertaken
do not provide all the evidence that would be required in an audit and, consequently, | do
not express an audit opinion on the view givenby the accounts.
Independent examiner’s | In the course of my examination, no matter has come to my attention [other than that
statement disclosed on the attached page”]
1. which gives me reasonable cause to believe that in any material respect the
requirements:
* — to keep accounting records in accordance with section 44(1) (a) of the 2005 Act and
Regulation 4 of the 2006 Accounts Regulations, and
* — to prepare accounts which accord with the accounting records and comply with |
Regulation 9 of the 2006 Accounts Regulations
have not been met, or
2. to which, in my opinion, attention should be drawn in order to enable a proper
nderstandingof the accounts to be reachec
. ign
Signed™*: oS /O |DOZGS
Name:
Relevant professional
qualification(s) or body
(if any):
eee aie a Pes |
Address:
*Please delete the words in the bra s which have come to your attention on the
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> *Please delete the words in the bra following page. ** OSCR will accept digital or typed signatures
| |
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APPENDIX 3
Disclosure section
Only complete if the examiner needs to highlight material problems.
Give here brief details of | |
any items that the
examiner wishes to |
disclose
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