Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
**Charity number: 1182873**
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **UNAUDITED**
**TRUSTEES' REPORT AND FINANCIAL STATEMENTS**
**FOR THE YEAR ENDED 31 DECEMBER 2024**
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **CONTENTS**
||Page|
|---|---|
|**Reference and Administrative Details of the CIO, its Trustees and Advisers**|1|
|**Trustees' Report**|2 - 6|
|**Independent Examiner's Report**|7 - 8|
|**Statement of Financial Activities**|9|
|**Balance Sheet**|10|
|**Notes to the Financial Statements**|11 - 24|
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **REFERENCE AND ADMINISTRATIVE DETAILS OF THE CIO, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 DECEMBER 2024**
|**Trustees**|Tony Holland, President and Chair|
|---|---|
||François Besnier, Vice President|
||Scott Arant|
||Karin Clarke|
||Gaby Erazo|
||Lynn Garrick|
||Nathalie Kayadjanian|
||Svetlana Labun|
||Tunde Liplin|
||Craig Moore|
||Kate Woodcock|
||Lantz Yap|
|**Charity (CIO) registered**
**number**
1182873
**Principal office**
Salisbury House
Station Road
Cambridge
CB1 2LA
**Independent Examiner**
M Hewett FCA DChA
Peters Elworthy & Moore
Chartered Accountants
Salisbury House
Station Road
Cambridge
CB1 2LA
**Bankers**
HSBC Bank Plc
63-64 St Andrews Street
Cambridge
CB2 3BZ
**CEO**
Margaret Walker - appointed January 2025
Marguerite Hughes - resigned February 2025||
Page 1
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT FOR THE YEAR ENDED 31 DECEMBER 2024**
The Trustees present their annual report together with the financial statements of the CIO for the year 1 January 2024 to 31 December 2024. The Trustees confirm that the annual report and financial statements of the CIO comply with the current statutory requirements, the requirements of the CIO's governing document and the provisions of the Statement of Recommended Practice (SORP) applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102) (second edition of the Charities SORP (FRS102) October 2019, effective 1 January 2019).
## **OBJECTIVES, ACTIVITIES AND MAIN ACHIEVEMENTS**
## **a. Policies, Values and objectives**
IPWSO works to improve the quality of life for all people with Prader Willi syndrome (PWS) and their families worldwide. We provide information and support to caregivers, health professionals and families. We encourage national PWS associations to exchange and share their projects and experiences. We fund free testing for diagnosis in countries where it is not available.
## **Values**
1. **Global Solidarity.** We are committed to working for a more equal world where all people with PWS can achieve their full potential regardless of their economic, geographic or family circumstances.
2. **Commitment to Science.** We believe that people with PWS and their families deserve clinical care, treatment recommendations, services and support that are based on rigorous empirical research and we will promote scientific reasoning throughout our organisation.
3. **Collaboration.** Premised on a belief that we can all learn from each other and benefit from each other’s work, we are committed to fostering new relationships, willingly supporting others, and working cooperatively with diverse stakeholders in pursuit of common goals.
4. **Respect for all.** We are committed to equality for all people regardless of their sex, sexual orientation or gender reassignment, their race, colour or religion, their disability, marriage status or age.
The objectives of the CIO are, for the public benefit:
1. **Building Communities.** To support the growth of new and existing PWS associations and unite the global PWS community for the benefit of all its members.
2. **Equal Opportunities.** To strive for a world where people with PWS have equal opportunities to their peers, and all people with PWS, and their families, have access to current, evidence-based knowledge, treatments, services and support.
3. **Research for all.** To disseminate research findings in ways that make current knowledge accessible to all and foster research that reflects the diverse needs of people with PWS and their families around the world.
4. **Funding to meet needs.** To attract adequate and sustainable IPWSO funding to enable us to better support people with PWS and their families, in particular those most in need.
The Vision of the CIO is:
A world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals.
The Mission of the CIO is:
To unite the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024**
with people with PWS.
In setting objectives and planning for activities, the Trustees have given due consideration to general guidance published by the Charity Commission relating to public benefit, including the guidance 'Public benefit: running a charity (PB2)'.
## **b. Activities undertaken to achieve objectives**
## **Building Communities:**
- IPWSO fostered the growth of existing PWS associations by funding a variety of small projects including camps for people with PWS in Portugal, the development of a website by the PWS Association in Costa Rica and providing travel funds and support for expert speakers at PWS in-person and online conferences and meetings.
- Our Famcare Board held meetings to facilitate different time zones to bring families and carers together in a safe environment to discuss aspects of PWS and to develop appropriate guidance materials.
- We held information and consultation meetings on the Foundation for Prader Willi Research’s Global PWS Registry and on “ _Telling the Story of PWS_ ”. These activities are designed to share information, explore new initiatives, encourage collaboration and gain a better understanding of the needs of the PWS community globally.
- Our Professional Providers and Caregivers Board (PPCB) launched a Caregivers Forum, the aim of which is to provide a virtual space for professional PWS caregivers worldwide to connect and collaborate.
- PPCB also held their 6[th] International PWS Caregivers’ Conference in Berlin in May 2024.
- In 2024 IPWSO was a member of, or formally affiliated with, the following international organisations: European Medicines Agency, European Society of Endocrinology (ESE), EURORDIS, Global Genes, Healthcare Information for All (HIFA), International Alliance of Patients’ Organizations (IAPO), International Collaboration on Rare Diseases and Orphan Drugs (ICORD), National Organization for Rare Disorders (NORD), Prader-Willi Syndrome Clinical Trial Consortium (PWS-CTC), and Rare Diseases International (RDI).
## **Equal Opportunities** :
- The IPWSO Advice Service responded to over 100 enquiries from 40 countries.
- For the 22[nd] consecutive year we offered free diagnostic testing for PWS to families unable to access or afford testing in their own countries.
- A new publication entitled “People with Prader-Willi syndrome can avoid obesity” was created and translated into Arabic and French. We provided funding for the translation of key documents into Arabic and Spanish for PWS Associations in Egypt and Brazil.
- Grants were provided to help support conferences and meetings in Bulgaria, China, Mexico and New Zealand and input from IPWSO’s experts was presented in-person and online.
- Travel Fellowships were provided for 5 medical professionals to attend the 15[th] Congress of the African Society for Paediatric and Adolescent Endocrinology (ASPAE) in Algiers, Algeria, and for delegate attendance at the 6[th] PWS Professional Providers and Caregivers Conference in Berlin. These grants were made available to people from underserved countries, such as Vietnam and Colombia who would not otherwise be able to attend.
- Our online library of educational resources continues to grow and the contents are made freely available and translated into numerous languages. This year we produced several short videos arising from the 6[th] International PWS Caregivers’ Conference in Berlin on topics including ageing, what it is like to live with PWS, and friends, partnerships and sexuality.
- IPWSO hosted information tables at scientific conferences including the 15[th] Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE 2024) in Algiers, Algeria (7-8 March 2024), the International Child Neurology Conference, Cape Town, South Africa (6 - 10 May 2024), the APPES-ISPAE Joint Meeting in Yashobhoomi, New Delhi, India (2-5 October 2024) and the European Society of Paediatric Endocrinology in Liverpool, UK (16-18 November 2024).
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024**
## **Research for all** :
- Our Research and Clinical Trials Committee held two Online Meetings. In September we held a _Clinical Trials Update Meeting_ , bringing together the latest thinking, research findings and clinical trials from healthcare companies that are active in the PWS space and in November we focused on _Global Access to Therapies for People with Prader-Willi Syndrome: Understanding the Challenge and Seeking Solutions_ and a presentation on IPWSO’s preliminary results from a study on _Global Availability of Growth Hormone Treatment of PWS_ .
- IPWSO presented at various conferences including ASPAE 2024 and ESPE 2024.
- IPWSO continued to provide an online resource of academic papers on clinical and scientific aspects of PWS.
- The Orphanet Journal of Rare Diseased published our study in February 2024 on _Residential Care - Body weight, behaviours of concern, and social contact in adults and adolescents with Prader-Willi syndrome in full-time care services: Findings from pooled international archival data_ **.** Orphanet J Rare Dis. 2024 Feb 7;19(1):48.
- Work continues to interrogate data from IPWSO’s study on _Global Availability of Growth Hormone Treatment for People with PWS._
- Work continued on our study into _Improving mental health and well-being for people with PWS_ which will be published in 2025.
- We helped fund research carried out by medical research professionals in Malaysia and India.
## **Funding to meet needs** :
- In 2024 IPWSO held three Money Market Investment Accounts with HSBC with a total deposit of $266,141 and benefiting from interest of $11,637 at 31.12.24.
- We continue to aim to agree with funders a 15% allocation of grant income to project management costs.
- Our fundraising efforts were impacted by staffing difficulties in 2024 which prevented planned fundraising activities.
- Specific projects including educational outreach activities, support for small projects, meetings, conferences and workshops and travel fellowships. These were supported by funding from the healthcare industry and Friends of IPWSO (USA).
More information on IPWSO’s work is available in the Annual Report.
## **FINANCIAL REVIEW**
## **a. Going concern**
After making appropriate enquiries, the Trustees have a reasonable expectation that the CIO has adequate resources to continue in operational existence for the foreseeable future. For this reason, they continue to adopt the going concern basis in preparing the financial statements. Further details regarding the adoption of the going concern basis can be found in the accounting policies.
## **b. Reserves policy**
As part of its ongoing financial monitoring, IPWSO has established an Investment Committee which in collaboration with IPWSO’s Finance Committee, has recommended to the Trustees an appropriate level of financial reserves for 2024. IPWSO holds reserves to ensure it can continue operating when unexpected events occur, such as a sudden loss of an income stream or an unexpected cost. At 31 December 2024 a total of $266,141 is invested in three money market accounts of which $206,000 is retained for general reserves and $60,141 in conference-specific reserves. At the year-end, reserves (representing unrestricted funds excluding any designated funds) amounted to $294,146. The Trustees will look for opportunities to utilise excess reserves during 2025.
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024**
## **c. Results for the year**
Income received during the year totalled $308,127 (2023: $208,262), of which $189,243 was restricted and $118,884 was unrestricted. Restricted income came in the form of grants and donations from bodies within the healthcare industry, corporations and individuals. Expenditure totalled $272,982 (2023: $202,956), of which $145,225 was spent from restricted funds.
There was a net surplus on restricted funds of $78,577 which has increased brought forward funds to a total of $153,519 (2023: $74,942) to be carried forward. A deficit of $43,432 on unrestricted funds, when deducted from opening funds, results in a total to be carried forward of $294,146 (2023: $337,578).
## **STRUCTURE, GOVERNANCE AND MANAGEMENT**
## **a. Constitution and governance**
International Prader-Willi Syndrome Organisation is a registered charity, number 1182873, and is constituted as a charitable incorporated organisation under a Governing document dated 9 April 2019.
## **b. Methods of appointment or election of Trustees**
The management of the CIO is the responsibility of the Trustees who are elected and coopted under the terms of the Governing document.
## **c. Organisational structure and decision making policies**
The charity's organisational structure was altered in 2022 and consists of a Board of Trustees and also Committees and Advisory Boards, each with its own terms of reference. The Board of Trustees decided to alter the regularity and format of meetings, now alternating monthly between Board Meetings and Consultation Meetings, the latter of which are open to volunteers and advisors and the objective of which is to review the charity’s operations and strategy and to increase engagement and understanding of issues affecting the Charity. At other times all Trustees are kept informed of issues via email and they contribute to making key decisions. The extent to which Trustees’ responsibilities for decisions affecting the development and operation of the charity are devolved day to day to the CEO, is set out in the CEO’s contract of employment and terms of reference.
## **d. Policies adopted for the induction and training of Trustees**
Potential and new Trustees are advised of the Charity's objectives, its activities and the public benefit requirement at the Trustees’ Induction, and support is available to them from fellow Trustees. Other information regarding their duties as Trustees is available from the Charity Commission.
## **PLANS FOR THE FUTURE**
IPWSO’s plans for 2025 and onwards include preparation for the 12[th] International Prader-Willi Syndrome Conference: United in Hope (PWS 2025) to be held from 24-28 June 2025 at the Arizona Grand Resort and Spa in Phoenix, Arizona, USA, in partnership with Prader-Willi Syndrome Association, USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR). IPWSO envisages that this unique collaboration will serve as a catalyst for the largest international PWS conference ever held. Marguerite Hughes, IPWSO’s Chief Executive Officer, will be stepping down from her role for personal reasons with effect from 28 February 2025. She will be very much missed. Margaret Walker has been appointed as our new CEO and will take up the position from 1 January 2025. There will be a period of handover and Marguerite Hughes will continue to support IPWSO as a volunteer to assist with the delivery of PWS 2025. We will also recruit a new Fundraising and Communications Manager in 2025.
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024**
## **STATEMENT OF TRUSTEES' RESPONSIBILITIES**
The Trustees are responsible for preparing the Trustees' Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).
The law applicable to charities in England & Wales requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the CIO and of its incoming resources and application of resources, including its income and expenditure, for that period. In preparing these financial statements, the Trustees are required to:
- select suitable accounting policies and then apply them consistently;
- observe the methods and principles of the Charities SORP (FRS 102);
- make judgments and accounting estimates that are reasonable and prudent;
- state whether applicable UK Accounting Standards (FRS 102) have been followed, subject to any material departures disclosed and explained in the financial statements;
- prepare the financial statements on the going concern basis unless it is inappropriate to presume that the CIO will continue in business.
The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the CIO's transactions and disclose with reasonable accuracy at any time the financial position of the CIO and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the Governing document. They are also responsible for safeguarding the assets of the CIO and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
Approved by order of the members of the board of Trustees and signed on their behalf by:
................................................
**Craig Moore Treasurer**
Date: 31 March 2025
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 DECEMBER 2024**
## **INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION ('the CIO')**
I report to the charity Trustees on my examination of the accounts of the CIO for the year ended 31 December 2024.
## **RESPONSIBILITIES AND BASIS OF REPORT**
As the Trustees of the CIO you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 ('the 2011 Act').
I report in respect of my examination of the CIO's accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed the applicable Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act.
## **INDEPENDENT EXAMINER'S STATEMENT**
Since the CIO's gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that I am qualified to undertake the examination because I am a member of The Institute of Chartered Accountants in England and Wales, which is one of the listed bodies.
Your attention is drawn to the fact that the CIO has prepared the accounts in accordance with Accounting and Reporting by Charities: Statement 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 102) in preference to the Accounting and Reporting by Charities: Statement of Recommended Practice issued on 1 April 2005 which is referred to in the extant regulations but has been withdrawn.
I understand that this has been done in order for the accounts to provide a true and fair view in accordance with the Generally Accepted Accounting Practice effective for reporting periods beginning on or after 1 January 2015.
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:
1. accounting records were not kept in respect of the CIO as required by section 130 of the 2011 Act; or
2. the accounts do not accord with those records; or
3. the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) 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.
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **INDEPENDENT EXAMINER'S REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2024**
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
This report is made solely to the CIO's Trustees, as a body, in accordance with Part 4 of the Charities (Accounts and Reports) Regulations 2008. My work has been undertaken so that I might state to the CIO's Trustees those matters I am required to state to them in an Independent Examiner's Report and for no other purpose. To the fullest extent permitted by law, I do not accept or assume responsibility to anyone other than the CIO and the CIO's Trustees as a body, for my work or for this report.
Signed:
> Dated: 02 April 2025
**M HEWETT FCA DCHA PETERS ELWORTHY & MOORE**
Chartered Accountants
Cambridge
Page 8
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2024**
|**Note**
**INCOME FROM:**
Donations
2
Charitable activities
3
Investments
4
**TOTAL INCOME**
**EXPENDITURE ON:**
Charitable activities
5
**TOTAL EXPENDITURE**
**NET INCOME/(EXPENDITURE)**
Transfers between funds
13
**NET MOVEMENT IN FUNDS**
**RECONCILIATION OF FUNDS:**
Total funds brought forward
Net movement in funds
**TOTAL FUNDS CARRIED FORWARD**|**Restricted**
**funds**
**2024**
**$**
**183,816**
**5,427**
**-**
**189,243**
**145,225**
**145,225**
**44,018**
**34,559**
**78,577**
**74,942**
**78,577**
**153,519**|**Unrestricted**
**funds**
**2024**
**$**
**56,928**
**50,319**
**11,637**
**118,884**
**127,757**
**127,757**
**(8,873)**
**(34,559)**
**(43,432)**
**337,578**
**(43,432)**
**294,146**|**Total**
**funds**
**2024**
**$**
**240,744**
**55,746**
**11,637**
**308,127**
**272,982**
**272,982**
**35,145**
**-**
**35,145**
**412,520**
**35,145**
**447,665**|Total
funds
2023
$ 183,017
20,717
4,528|
|---|---|---|---|---|
|||||208,262|
|||||202,956|
|||||202,956|
|||||5,306
-|
|||||5,306|
|||||407,214
5,306|
|||||412,520|
The Statement of Financial Activities includes all gains and losses recognised in the year.
The notes on pages 11 to 24 form part of these financial statements.
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **BALANCE SHEET AS AT 31 DECEMBER 2024**
|**Note**
**CURRENT ASSETS**
Debtors
10
Investments
11
Cash at bank and in hand
Creditors: amounts falling due within one
year
12
**NET CURRENT ASSETS**
**TOTAL NET ASSETS**
**CHARITY FUNDS**
Restricted funds
13
Unrestricted funds
13
**TOTAL FUNDS**|**4,000**
**266,141**
**191,671**
**461,812**
**(14,147)**|**2024**
**$**
**447,665**
**447,665**
**153,519**
**294,146**
**447,665**|17,776
207,057
197,986
422,819
(10,299)|2023
$ 412,520|
|---|---|---|---|---|
||||||
|||||412,520|
|||||74,942
337,578|
||||||
|||||412,520|
The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by:
................................................
## **Craig Moore Treasurer**
## Date: 31 March 2025
The notes on pages 11 to 24 form part of these financial statements.
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **1. ACCOUNTING POLICIES**
## **1.1 BASIS OF PREPARATION OF FINANCIAL STATEMENTS**
The financial statements have been prepared in accordance with the Charities SORP (FRS 102) - Accounting and Reporting by Charities: Statement 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 102) (effective 1 January 2019), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Charities Act 2011.
The financial statements have been prepared to give a 'true and fair' view and have departed from the Charities (Accounts and Reports) Regulations 2008 only to the extent required to provide a 'true and fair' view. This departure has involved following the Charities SORP (FRS 102) published in October 2019 rather than the Accounting and Reporting by Charities: Statement of Recommended Practice effective from 1 April 2005 which has since been withdrawn.
International Prader-Willi Syndrome Organisation meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy.
No significant estimates or judgements have been made in the course of preparing the financial statements.
## **1.2 GOING CONCERN**
The trustees have reviewed the financial position of the CIO, and have a reasonable expectation that the CIO has adequate resources to continue in operational existence for the foreseeable future. Accordingly, the financial statements continue to be prepared on the going concern basis.
## **1.3 FUND ACCOUNTING**
General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the CIO and which have not been designated for other purposes.
Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors or which have been raised by the CIO for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.
Investment income, gains and losses are allocated to the appropriate fund.
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **1. ACCOUNTING POLICIES (CONTINUED)**
## **1.4 INCOME**
All income is recognised once the CIO has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably.
On receipt, donated professional services and facilities are recognised on the basis of the value of the gift to the CIO which is the amount it would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt.
Grants are included in the Statement of Financial Activities on a receivable basis. The balance of income received for specific purposes but not expended during the period is shown in the relevant funds on the Balance Sheet. Where income is received in advance of entitlement of receipt, its recognition is deferred and included in creditors as deferred income. Where entitlement occurs before income is received, the income is accrued.
Gifts in kind donated for distribution are included at valuation and recognised as income when they are distributed to the projects. Gifts donated for resale are included as income when they are sold.
Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation. Donations are recognised in the period in which they are received.
Membership fee income, billed on a calendar year basis, is recognised in the period to which it relates.
Conference registration fees are recognised after the conference has taken place. Fees received in advance are deferred.
Other income is recognised in the period in which it is receivable and to the extent the goods have been provided or on completion of the service.
## **1.5 EXPENDITURE**
Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is classified by activity.
Expenditure on charitable activities is incurred on directly undertaking the activities which further the CIO's objectives, as well as any associated support costs. Support costs including governance costs are those costs incurred in support of expenditure on the objects of the Charity. Governance costs are those incurred in connection with administration of the Charity and compliance with constitutional and statutory requirements.
Grants payable are charged in the year when the offer is made except in those cases where the offer is conditional, such grants being recognised as expenditure when the conditions attaching are fulfilled. Grants offered subject to conditions which have not been met at the year end are noted as a commitment, but not accrued as expenditure.
All expenditure is inclusive of irrecoverable VAT.
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Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **1. ACCOUNTING POLICIES (CONTINUED)**
## **1.6 INTEREST RECEIVABLE**
Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the CIO; this is normally upon notification of the interest paid or payable by the institution with whom the funds are deposited.
## **1.7 FOREIGN CURRENCIES**
Monetary assets and liabilities denominated in foreign currencies are translated into dollars at rates of exchange ruling at the reporting date.
Transactions in foreign currencies are translated into dollars at the rate ruling on the date of the transaction.
Exchange gains and losses are recognised in the Statement of Financial Activities.
## **1.8 DEBTORS**
Trade and other debtors are recognised at the settlement amount after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.
## **1.9 CASH AT BANK AND IN HAND**
Cash at bank and in hand includes cash and short-term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account.
## **1.10 LIABILITIES AND PROVISIONS**
Liabilities are recognised when there is an obligation at the Balance Sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably.
Liabilities are recognised at the amount that the CIO anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide.
## **1.11 FINANCIAL INSTRUMENTS**
The CIO only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.
## **1.12 PENSIONS**
The CIO operates a defined contribution pension scheme and the pension charge represents the amounts payable by the CIO to the fund in respect of the year.
Page 13
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **2. INCOME FROM DONATIONS**
|Donations
Grants
**TOTAL 2024**
TOTAL 2023|**Restricted**
**funds**
**2024**
**Unrestricted**
**funds**
**2024**
**$**
**$**
44,479
56,928
139,337
-
183,816
56,928
140,029
42,988|**Total**
**funds**
**2024**
**$**
**101,407**
**139,337**
**240,744**
183,017|Total
funds
2023
$ 96,369
86,648|
|---|---|---|---|
||||183,017|
|||||
Included in donations is a $6,405 gift in kind relating to legal advice.
## **3. INCOME FROM CHARITABLE ACTIVITIES**
|Member subscriptions
Diagnostic testing
PWSA USA Association (ECHO project)
Conference registration fees
**TOTAL 2024**
TOTAL 2023|**Restricted**
**funds**
**2024**
**Unrestricted**
**funds**
**2024**
**$**
**$**
-
9,728
5,427
-
-
-
-
40,591
5,427
50,319
5,465
15,252|**Total**
**funds**
**2024**
**$**
**9,728**
**5,427**
**-**
**40,591**
**55,746**
20,717|Total
funds
2023
$ 10,252
5,465
5,000
-|
|---|---|---|---|
||||20,717|
|||||
Page 14
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **4. INVESTMENT INCOME**
|**Unrestricted**
**funds**
**2024**
**$**
Money market interest
11,637
TOTAL 2023
4,528|**Total**
**funds**
**2024**
**$**
**11,637**
4,528|Total
funds
2023
$ 4,528|
|---|---|---|
||||
## **5. ANALYSIS OF EXPENDITURE BY ACTIVITIES**
|Charitable expenditure
TOTAL 2023|**Activities**
**undertaken**
**directly**
**2024**
**$**
221,087
173,973|**Grant**
**funding of**
**activities**
**2024**
**$**
6,730
7,899|**Support**
**costs**
**2024**
**$**
45,165
21,084|**Total**
**funds**
**2024**
**$**
**272,982**
202,956|Total
funds
2023
$ 202,956|
|---|---|---|---|---|---|
|||||||
## **ANALYSIS OF DIRECT COSTS**
|Staff costs
Conferences and events costs
Diagnostic testing
Website costs
Translations|**Total**
**funds**
**2024**
**$**
**113,635**
**99,522**
**4,729**
**3,201**
**-**
**221,087**|Total
funds
2023
$ 119,130
44,174
7,261
2,332
1,076|
|---|---|---|
|||173,973|
Page 15
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **5. ANALYSIS OF EXPENDITURE BY ACTIVITIES (CONTINUED)**
## **ANALYSIS OF SUPPORT COSTS**
|Accountancy and bookkeeping fees
Foreign currency exchange
Advertising and marketing
Insurance
IT software and consumables
Bank charges
Miscellaneous expenses
Office running costs
Professional and consultancy fees|**Total**
**funds**
**2024**
**$**
**10,676**
**12,028**
**284**
**3,709**
**2,420**
**1,076**
**1,340**
**5,982**
**7,650**
**45,165**|Total
funds
2023
$ 10,462
(7,821)
200
1,512
1,866
968
1,163
4,949
7,785|
|---|---|---|
|||21,084|
Page 16
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **6. ANALYSIS OF GRANTS**
|Microgrants
TOTAL 2023|**Grants to**
**Institutions**
**2024**
**$**
5,147
6,437|**Grants to**
**Individuals**
**2024**
**$**
1,583
1,462|**Total**
**funds**
**2024**
**$**
**6,730**
7,899|Total
funds
2023
$ 7,899|
|---|---|---|---|---|
||||||
The CIO has made the following material grants to institutions during the year:
|**NAME OF INSTITUTION**
The SPINE Foundation
Magyar Prader-Willi Szindróma Egyesulet
Aster CMI Hospital
PWS Thailand Association
Taylor's University Malaysia
University Kebangsaan Malaysia
Associação Brasileira da Síndrome de Prader-Willi
Associação SPW Portugal
ASOPRAWI (PWS Costa Rica)
Aster CMI Hospital
**7.**
**INDEPENDENT EXAMINER'S REMUNERATION**
Fees payable to the CIO's independent examiner for the independent
examination of the CIO's annual accounts
Fees payable to the CIO's independent examiner in respect of:
Preparation of statutory financial statements
Bookkeeping services|**2024**
**$**
**-**
**-**
**-**
**-**
**-**
**1,000**
**1,162**
**1,200**
**1,085**
**700**
**5,147**
**2024**
**$**
**1,969**
**2,809**
**4,599**|2023
$ 450
1,493
1,500
1,500
1,494
-
-
-
-
-|
|---|---|---|
||||
|||6,437|
|||2023
$ 1,908
2,723
4,483|
Page 17
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **8. STAFF COSTS AND KEY MANAGEMENT PERSONNEL**
|Wages and salaries
Social security costs
Contribution to defined contribution pension schemes|**2024**
**$**
**106,690**
**3,502**
**3,443**
**113,635**|2023
$ 113,233
3,746
2,151|
|---|---|---|
||||
|||119,130|
The average number of persons employed by the CIO during the year was as follows:
||**2024**|2023|
|---|---|---|
||**No.**|No.|
|Staff|**4**|4|
No employee received remuneration amounting to more than $60,000 in either year.
The charity considers its key management personnel to be the Trustees and the CEO, Marguerite Hughes. During the year, the CEO received remuneration (comprising gross salary, employer's national insurance and employer's pension contributions) totalling $20,281 (2023: $19,860).
## **9. TRUSTEES' REMUNERATION AND EXPENSES**
During the year, no Trustees received any remuneration or other benefits (2023 - $NIL).
During the year ended 31 December 2024, expenses totalling $7,556 were reimbursed or paid directly to 6 Trustees (2023 - $5,072 to 3 Trustees). These expenses related to travel, accommodation and subsistence.
## **10. DEBTORS**
||**2024**|2023|
|---|---|---|
||**$**|$|
|Trade debtors|**4,000**|17,776|
Page 18
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **11. CURRENT ASSET INVESTMENTS**
||||||**2024**|2023|
|---|---|---|---|---|---|---|
||||||**$**|$|
|Money market investments (maturing between|6|months and|1|year)|**266,141**|207,057|
## **12. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR**
|Trade creditors
Other taxation and social security
Other creditors
Accruals and deferred income
Deferred income at 1 January 2024
Resources deferred during the year
Amounts released from previous periods|**2024**
**$**
**2,052**
**1,826**
**640**
**9,629**
**14,147**
**2024**
**$**
**163**
**-**
**(163)**
**-**|2023
$ 4,757
296
453
4,793|
|---|---|---|
||||
|||10,299|
|||2023
$ -
163
-|
||||
|||163|
Deferred income represents 2024 membership fees received in advance.
Page 19
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **13. STATEMENT OF FUNDS**
## **STATEMENT OF FUNDS - CURRENT YEAR**
|**UNRESTRICTED FUNDS**
General Funds
**RESTRICTED FUNDS**
Attendance at educational
conferences
Diagnostic testing
6th International Caregivers
Conference - Berlin
Friends: translations
Friends: meetings and
workshops
Friends: travel scholarship PCC
(Berlin)
Friends 3 year grant
Friends: microgrants
Friends: filming PPC 2024
conference
Friends: travel and strategic
fellowships for 12th
International Conference
Translation and interpretation
IPWSO Caregivers' Forum
12th International Conference -
other funding
**TOTAL OF FUNDS**|**Balance at 1**
**January**
**2024**
**$**
**337,578**
**17,500**
**829**
**12,001**
**1,098**
**23,064**
**4,600**
**-**
**11,050**
**4,800**
**-**
**-**
**-**
**-**
**74,942**
**412,520**|**Income**
**$**
**118,884**
**42,837**
**5,427**
**19,647**
**-**
**-**
**-**
**100,000**
**-**
**-**
**11,500**
**5,000**
**4,000**
**832**
**189,243**
**308,127**|**Expenditure**
**$**
**(127,757)**
**(30,683)**
**(5,330)**
**(65,948)**
**(4)**
**(16,300)**
**(3,561)**
**(9,377)**
**(7,597)**
**-**
**(4,410)**
**15**
**(2,000)**
**(30)**
**(145,225)**
**(272,982)**|**Transfers**
**in/out**
**$**
**(34,559)**
**10,000**
**-**
**34,300**
**-**
**(6,764)**
**(1,039)**
**-**
**(1,049)**
**(4,800)**
**3,911**
**-**
**-**
**-**
**34,559**
**-**|**Balance at**
**31**
**December**
**2024**
**$**
**294,146**|
|---|---|---|---|---|---|
||||||**39,654**
**926**
**-**
**1,094**
**-**
**-**
**90,623**
**2,404**
**-**
**11,001**
**5,015**
**2,000**
**802**|
||||||**153,519**|
||||||**447,665**|
Page 20
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **13. STATEMENT OF FUNDS (CONTINUED)**
## **STATEMENT OF FUNDS - PRIOR YEAR**
|**UNRESTRICTED FUNDS**
General Funds
**RESTRICTED FUNDS**
Advice line
Attendance at educational
conferences
Diagnostic testing
6th International Caregivers
Conference - Berlin
Consultancy funding
ECHO funding
European Congress of
Endocrinology 2023
Friends: CRM System
Friends: translations
Friends: Pakistan conference
Friends: meetings and
workshops
Friends: travel scholarship PCC
(Berlin)
Friends: microgrants
Friends: filming PPC 2024
conference
Raising Awareness
**TOTAL OF FUNDS**|Balance at
1 January
2023
$ 368,878
-
-
6,079
-
-
-
-
2,253
-
7,380
20,270
-
-
-
2,354
38,336
407,214|Income
$ 62,768
1,347
40,760
5,465
17,500
6,035
11,000
435
-
2,000
-
40,752
-
20,200
-
-
145,494
208,262|Expenditure
$ (116,277)
(1,327)
(15,830)
(10,915)
(502)
(6,049)
(11,065)
(435)
-
(915)
-
(28,628)
-
(11,013)
-
-
(86,679)
(202,956)|Transfers
in/out
$ 22,209
(20)
(7,430)
200
(4,997)
14
65
-
(2,253)
13
(7,380)
(9,330)
4,600
1,863
4,800
(2,354)
(22,209)
-|Balance at
31
December
2023
$ 337,578|
|---|---|---|---|---|---|
||||||-
17,500
829
12,001
-
-
-
-
1,098
-
23,064
4,600
11,050
4,800
-|
||||||74,942|
||||||412,520|
Page 21
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **13. STATEMENT OF FUNDS (CONTINUED)**
IPWSO Advice Line – this fund represents monies raised from fundraising campaigns to support IPWSO’s work to ensure that everyone across the world has equal access, through our advice line, to expert assistance, knowledge and support about the care and treatment of people with PWS.
Attendance at Educational Conferences – Educational Outreach - this fund represents monies received from the healthcare industry to support IPWSO’s presence at PWS related international conferences. Support is provided for project management costs, educational material costs, exhibition costs, postage and travel costs.
Diagnostic Testing – this fund represents monies raised from OT4B and from fundraising campaigns and is used to support diagnostic testing for PWS.
6th International PWS Caregivers’ Conference in Berlin (PPC 2024) – this fund represents sponsorship donations associated with the conference, and also includes funds provided by Friends of IPWSO (USA) to support project management, administrative costs, delegate registration fee and travel costs for those for whom costs would be prohibitive.
Consultancy – this fund represents monies received from a private, anonymous donor for the purpose of obtaining professional advice on fundraising.
Mental Health ECHO® – this fund represents monies received from Friends of IPWSO (USA) and from the healthcare industry to support the provision of online educational workshops specifically in relation to PWS and mental health and behaviour, and also to support the purchase of computer hardware.
European Congress of Endocrinology 2023 – this funds represents monies received from the ESE Patient Advocacy Group to attend the European Congress of Endocrinology in Turkey in May 2023.
CRM System – this fund represents monies received from Friends of IPWSO (USA) to support a new customer relationship management system.
Friends translations – this fund represents monies received from Friends of IPWSO (USA) to translate educational materials into various languages and to provide interpreters at international meetings.
Friends pakistan conference – this is a grant to support a conference focused on Prader-Willi Syndrome to be held in Pakistan.
Friends meetings and workshops – funding from Friends of IPWSO (USA) to fund costs associated with the 3rd PWS International Symposium in Columbia.
Friends 2024 3-year Grant Scheme – this fund represents funds provided by Friends of IPWSO (USA) for projects to be decided upon by the IPWSO Grants Committee to include conferences, workshops, meetings, small projects and travel fellowships for the three year period commencing 2024; $5,000 each year is to be used for project management costs.
Microgrants – this fund represents monies received from Friends of IPWSO (USA) to support smaller projects, initiated by groups, PWS associations and interested parties that will be of benefit to people living with and affected by PWS.
Friends: travel scholarship PCC – this fund represents monies for travel scholarships for delegate attendance at the 15th Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE 2024) in Algiers, Algeria.
Friends: filming PPC 2024 conference – this fund represents monies carried forward from 2023 ($4,800)
Page 22
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **13. STATEMENT OF FUNDS (CONTINUED)**
for the production of educational resources arising from the conference in Berlin.
Friends Strategic Grants – this grant represents monies to support travel fellowships for attendance at the United in Hope: PWS 2025 International Conference in Arizona, USA in 2025.
Translation and Interpretation Fund – this fund represents funds received from Acadia Pharmaceuticals in 2024 for the purposes of translating updates to our Clinical and Scientific Consensus documents in 2025.
Funds to support the IPWSO Caregivers’ Forum – this fund represents monies to support the organisation of a Caregivers Forum, a new initiative launched in 2024.
Other funding for travel for 12th International Conference (USA) – this fund represents monies to support travel to PWS 2025 from other sources.
Raising Awareness – funds received from Friends of IPWSO USA including improvements to website functionality and preparing leaflets and collateral, including translations.
Transfers between funds have been made to compensate restricted funds where expenditure exceeds available restricted funds and where, at the agreement of the funder, restricted funds have been reassigned to another purpose or added to unrestricted funds.
## **14. ANALYSIS OF NET ASSETS BETWEEN FUNDS**
## **ANALYSIS OF NET ASSETS BETWEEN FUNDS - CURRENT PERIOD**
|Current assets
Creditors due within one year
**TOTAL**|**Restricted**
**funds**
**2024**
**Unrestricted**
**funds**
**2024**
**$**
**$**
159,277
302,535
(5,758)
(8,389)
153,519
294,146|**Total**
**funds**
**2024**
**$**
**461,812**
**(14,147)**
**447,665**|
|---|---|---|
## **ANALYSIS OF NET ASSETS BETWEEN FUNDS - PRIOR PERIOD**
|Current assets
Creditors due within one year
**TOTAL**|Restricted
funds
2023
$ 74,942
-
74,942|Unrestricted
funds
2023
$ 347,877
(10,299)
337,578|Total
funds
2023
$ 422,819
(10,299)
412,520|
|---|---|---|---|
Page 23
Docusign Envelope ID: EAFCEEE0-DCAB-4D70-B227-2C986F072401
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2024**
## **15. PENSION COMMITMENTS**
The CIO operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the CIO in an independently administered fund. The pension cost charge represents contributions payable by the CIO to the fund and amounted to $3,443 (2023 - $2,151). $640 (2023 - $453) were payable to the fund at the balance sheet date and are included in creditors.
## **16. VOLUNTEERS**
The hours committed by volunteers far outstrip the number of hours worked by paid staff members and IPWSO remains hugely grateful for their time, expertise and support. Volunteers spent 7,199 hours compared with 4,900 hours by staff.
## **17. RELATED PARTY TRANSACTIONS**
During the year, donations totaling $654 were received from 3 trustees and $21,710 from our Honorary President, Jean Phillips Martinsson. There are no conditions attached to these donations.
Page 24