DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
**Charity number: 1182873**
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **UNAUDITED**
**TRUSTEES' REPORT AND FINANCIAL STATEMENTS**
**FOR THE YEAR ENDED 31 DECEMBER 2023**
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **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 - 23|
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **REFERENCE AND ADMINISTRATIVE DETAILS OF THE CIO, ITS TRUSTEES AND ADVISERS FOR THE YEAR ENDED 31 DECEMBER 2023**
|**Trustees**|Tony Holland, Chair|
|---|---|
||Gaby Erazo|
||Svetlana Labun|
||Karin Clarke|
||Scott Arant|
||Tunde Liplin|
||Lantz Yap|
||Nathalie Kayadjanian|
||François Besnier|
||Kate Woodcock|
||Craig Moore|
||Lynn Garrick|
|**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**
Marguerite Hughes||
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT FOR THE YEAR ENDED 31 DECEMBER 2023**
The Trustees present their annual report together with the financial statements of the CIO for the year 1 January 2023 to 31 December 2023. 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: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023**
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:**
- In 2023 IPWSO welcomed Bulgaria and Costa Rica into membership and provided funding to enable the establishment of the PWS Association in Egypt and the Middle East, (PWS EG-ME).
- IPWSO fostered the growth of existing PWS associations by funding a variety of small projects including camps for people with PWS in Argentina and Hungary, translating educational materials into Thai, and also into 4 local languages in India, and hosting a parents’ workshop in Malaysia that focused on developing skills to help address the challenges of the teenage years.
- Six online educational seminars focusing on Mental Health (Mental Health ECHO®s) were held, and, in a new initiative, 4 on-line Family Meetings took place. These activities are designed to share information, encourage collaboration and gain a better understanding of the needs of the PWS community; meetings were organised to facilitate different time-zones.
- In 2023 IPWSO was a member of, or formally affiliated, with the following international Organisations: European Society of Endocrinology (ESE), EURORDIS, Global Genes, Healthcare Information for All (HIFA), International Alliance of Patients’ Organizations (IAPO), International Coalition of Organizations Supporting Endocrine Patients (ICOSEP), International Collaboration on Rare Diseases and Orphan Drugs (ICORD), National Organization for Rare Disorders (NORD), Prader-Willi Syndrome Clinical Trial Consortium (PWS-CTC), Rare Disease Ghana Initiative (RDGI) and Rare Diseases International (RDI).
## **Equal Opportunities** :
- The IPWSO Advice Service responded to over 100 enquiries from 47 countries including Iran, Costa Rica, Bulgaria, Turkey, Oman, Singapore, Cameroon, El Salvador, Honduras, Iraq and UAE.
- Fifteen referrals for diagnostic testing were funded. These were from countries which do not have access to diagnostic testing services – Peru, Jordan and the Philippines.
- A new publication entitled “Does your patient have PWS?” was created and translated into Arabic, French and Portuguese.
- Grants were provided to help support conferences and meetings in Brazil, China Colombia, India, Romania and South Africa and input from IPWSO’s experts was presented in-person and online.
- Travel Fellowships were provided for 4 medical professionals to attend the 14th Congress of the African Society for Paediatric and Adolescent Endocrinology (ASPAE) in Yaoundé, Cameroon.
- An online meeting about the key features and challenges of PWS was held for families from Ukraine and was facilitated by a translator to enable delegates to fully engage in discussions.
- Educational resources, including videos filmed at our International Conference in 2022, were made freely available and translated into numerous languages.
- IPWSO hosted information tables at scientific conferences including the 14th Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE) in Yaoundé, Cameroon, the 25th European Congress of Endocrinology (ECE) in Istanbul, Turkey, the European Paediatric Neurology Society Congress (EPNS) in the Czech Republic, and the Rare Disease Network’s 6th RARE Summit held in Cambridge, UK.
## **Research for all** :
- In 2023 IPWSO established a Research and Clinical Trials Committee, the purpose of which is to determine how best IPWSO can disseminate research findings and support research on topics of importance to the global PWS community that fall outside the remit of other organisations.
- IPWSO held a number of Summit Meetings in the year that discussed issues around balancing risk whilst promoting a good quality of life, and also received updates from healthcare companies that are active in PWS research and clinical trials.
- IPWSO presented at various conferences including the MetaECHO 2023 Global Conference in New Mexico.
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023**
- IPWSO continued to provide an online resource of academic papers on clinical and scientific aspects of PWS and also continued with research on mental health and behaviour, and research on specialized care services. These publications are due to be released in 2024.
## **Funding to meet needs** :
- In 2023 IPWSO opened two Money Market Investment Account with HSBC, depositing a total sum of $208,580 on 20th July (Account 1: $64,125 and Account 2: $144,455).
- IPWSO sought professional fundraising advice in order to identify sources from which it is most likely to raise funds.
- IPWSO will in future, where possible, allocate 15% of the grant income to project management costs.
- - Two fundraising campaigns were held in the year generating support to run the IPWSO Advice Line Service and to help boost general funds. Discussions commenced with a selection of PWS national associations regarding a possible shared fundraiser in 2024.
- Proposals to support specific projects were sent to the healthcare industry and foundations and trusts including 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 2023. IPWSO’s reserves policy is to retain sufficient unrestricted reserves to meet its obligations and to ensure financial stability and the Trustees intend to continue to invest $150,000 in general reserves and $60,000 in conference-specific reserves. At the year-end, reserves (representing unrestricted funds excluding any designated funds) amounted to $337,578. The Trustees will look for opportunities to utilise excess reserves during 2023.
## **c. Results for the year**
Income received during the year totalled $208,262 (2022: $399,476), of which $145,494 was restricted and $62,768 was unrestricted. Restricted income came in the form of grants and donations from bodies within the healthcare industry, corporations and individuals. Expenditure totalled $202,956 (2022: $324,176), of which $86,679 was spent from restricted funds.
There was a net surplus on restricted funds of $36,606 which has increased brought forward funds to a total of $74,942 (2022: $38,336) to be carried forward. A deficit of $31,300 on unrestricted funds, when deducted from opening funds, results in a total to be carried forward of $337,578 (2022: $368,878).
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023**
## **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 2024 and onwards include preparation for the 6th International Prader-Willi Syndrome Caregivers’ Conference in Berlin from 21-23 May 2024 and the United in Hope: International PWS Conference to be held from 24-28 June 2025 at the Arizona Grand Resort and Spa in Phoenix, Arizona, USA, in partnership with PWSA | USA and FPWR. IPWSO envisages that this unique collaboration will serve as a catalyst for the largest international PWS conference ever held.
## **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.
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **TRUSTEES' REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023**
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: 18 March 2024
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **INDEPENDENT EXAMINER'S REPORT FOR THE YEAR ENDED 31 DECEMBER 2023**
## **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 2023.
## **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**
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: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**INDEPENDENT EXAMINER'S REPORT (CONTINUED) FOR THE YEAR ENDED 31 DECEMBER 2023**
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: 25 March 2024
**M HEWETT FCA DCHA PETERS ELWORTHY & MOORE**
Chartered Accountants
Cambridge
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2023**
|**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
12
**NET MOVEMENT IN FUNDS**
**RECONCILIATION OF FUNDS:**
Total funds brought forward
Net movement in funds
**TOTAL FUNDS CARRIED FORWARD**|**Restricted**
**funds**
**2023**
**$**
**140,029**
**5,465**
**-**
**145,494**
**86,679**
**86,679**
**58,815**
**(22,209)**
**36,606**
**38,336**
**36,606**
**74,942**|**Unrestricted**
**funds**
**2023**
**$**
**42,988**
**15,252**
**4,528**
**62,768**
**116,277**
**116,277**
**(53,509)**
**22,209**
**(31,300)**
**368,878**
**(31,300)**
**337,578**|**Total**
**funds**
**2023**
**$**
**183,017**
**20,717**
**4,528**
**208,262**
**202,956**
**202,956**
**5,306**
**-**
**5,306**
**407,214**
**5,306**
**412,520**|Total
funds
2022
$ 178,426
221,050
-|
|---|---|---|---|---|
|||||399,476|
|||||324,176|
|||||324,176|
|||||75,300
-|
|||||75,300|
|||||331,914
75,300|
|||||407,214|
The Statement of Financial Activities includes all gains and losses recognised in the year.
The notes on pages 11 to 23 form part of these financial statements.
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **BALANCE SHEET AS AT 31 DECEMBER 2023**
|**Note**
**CURRENT ASSETS**
Debtors
9
Investments
10
Cash at bank and in hand
Creditors: amounts falling due within one
year
11
**NET CURRENT ASSETS**
**TOTAL NET ASSETS**
**CHARITY FUNDS**
Restricted funds
12
Unrestricted funds
12
**TOTAL FUNDS**|**17,776**
**207,057**
**197,986**
**422,819**
**(10,299)**|**2023**
**$**
**412,520**
**412,520**
**74,942**
**337,578**
**412,520**|654
-
411,626
412,280
(5,066)|2022
$ 407,214|
|---|---|---|---|---|
||||||
|||||407,214|
|||||38,336
368,878|
||||||
|||||407,214|
The financial statements were approved and authorised for issue by the Trustees and signed on their behalf by:
................................................
## **Craig Moore Treasurer**
## Date: 18 March 2024
The notes on pages 11 to 23 form part of these financial statements.
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **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: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **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.
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.
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.
All expenditure is inclusive of irrecoverable VAT.
## **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.
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **1. ACCOUNTING POLICIES (CONTINUED)**
## **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.
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DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **2. INCOME FROM DONATIONS**
|Donations
Grants
**TOTAL 2023**
TOTAL 2022|**Restricted**
**funds**
**2023**
**Unrestricted**
**funds**
**2023**
**$**
**$**
53,381
42,988
86,648
-
140,029
42,988
136,951
41,475|**Total**
**funds**
**2023**
**$**
**96,369**
**86,648**
**183,017**
178,426|Total
funds
2022
$ 178,426
-|
|---|---|---|---|
||||178,426|
|||||
## **3. INCOME FROM CHARITABLE ACTIVITIES**
|Member subscriptions
Grants
Diagnostic testing
PWSA USA Association (ECHO project)
Conference income
**TOTAL 2023**
TOTAL 2022|**Restricted**
**funds**
**2023**
**Unrestricted**
**funds**
**2023**
**$**
**$**
-
10,252
-
-
5,465
-
-
5,000
-
-
5,465
15,252
210,911
10,139|**Total**
**funds**
**2023**
**$**
**10,252**
**-**
**5,465**
**5,000**
**-**
**20,717**
221,050|Total
funds
2022
$ 10,139
38,926
3,565
-
168,420|
|---|---|---|---|
||||221,050|
|||||
## **4. INVESTMENT INCOME**
||**Unrestricted**|**Total**|Total|
|---|---|---|---|
||**funds**|**funds**|funds|
||**2023**|**2023**|2022|
||**$**|**$**|$|
|Money market interest|4,528|**4,528**|-|
Page 14
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **5. ANALYSIS OF EXPENDITURE BY ACTIVITIES**
|Charitable expenditure
TOTAL 2022|**Activities**
**undertaken**
**directly**
**2023**
**$**
181,872
277,695|**Support**
**costs**
**2023**
**$**
21,084
46,481|**Total**
**funds**
**2023**
**$**
**202,956**
324,176|Total
funds
2022
$ 324,176|
|---|---|---|---|---|
||||||
## **ANALYSIS OF DIRECT COSTS**
|Staff costs
ECHO project
Conferences and events costs
Diagnostic testing
Website costs
Clinical Trial Consortium
Translations|**Total**
**funds**
**2023**
**$**
**119,130**
**-**
**52,073**
**7,261**
**2,332**
**-**
**1,076**
**181,872**|Total
funds
2022
$ 110,151
2,878
142,535
2,922
906
1,000
17,303|
|---|---|---|
|||277,695|
Page 15
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **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
**6.**
**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|**Total**
**funds**
**2023**
**$**
**10,462**
**(7,821)**
**200**
**1,512**
**1,866**
**968**
**1,163**
**4,949**
**7,785**
**21,084**
**2023**
**$**
**1,908**
**2,723**
**4,483**|Total
funds
2022
$ 10,514
15,141
591
1,386
1,362
1,010
6,615
9,862
-|
|---|---|---|
|||46,481|
|||2022
$ 1,645
2,348
5,414|
## **7. STAFF COSTS AND KEY MANAGEMENT PERSONNEL**
|Wages and salaries
Social security costs
Contribution to defined contribution pension schemes|**2023**
**$**
**113,233**
**3,746**
**2,151**
**119,130**|2022
$ 106,627
1,532
1,992|
|---|---|---|
||||
|||110,151|
Page 16
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **7. STAFF COSTS AND KEY MANAGEMENT PERSONNEL (CONTINUED)**
The average number of persons employed by the CIO during the year was as follows:
||**2023**|2022|
|---|---|---|
||**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 $19,860 (2022: $18,678).
## **8. TRUSTEES' REMUNERATION AND EXPENSES**
During the year, no Trustees received any remuneration or other benefits (2022 - $NIL).
During the year ended 31 December 2023, expenses totalling $5,072 were reimbursed or paid directly to 3 Trustees (2022 - $2,964 to 4 Trustees). These expenses related to travel, accommodation and subsistence.
## **9. DEBTORS**
|Trade debtors
Other debtors|**2023**
**$**
**17,776**
**-**
**17,776**|2022
$ -
654|
|---|---|---|
||||
|||654|
Page 17
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **10. CURRENT ASSET INVESTMENTS**
||**2023**|2022|
|---|---|---|
||**$**|$|
|1-year money market investments|**207,057**|-|
## **11. 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 2023
Resources deferred during the year
Amounts released from previous periods|**2023**
**$**
**4,757**
**296**
**453**
**4,793**
**10,299**
**2023**
**$**
**-**
**163**
**-**
**163**|2022
$ 548
-
525
3,993|
|---|---|---|
||||
|||5,066|
|||2022
$ 66,329
-
(66,329)|
||||
|||-|
Deferred income represents 2024 membership fees received in advance.
Page 18
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **12. STATEMENT OF FUNDS**
## **STATEMENT OF FUNDS - CURRENT YEAR**
|**UNRESTRICTED FUNDS**
General Funds
**RESTRICTED FUNDS**
Advice line
Attendance at educational
conferences
Diagnostic testing
Caregivers Conference
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
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 19
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **12. STATEMENT OF FUNDS (CONTINUED)**
## **STATEMENT OF FUNDS - PRIOR YEAR**
|**UNRESTRICTED FUNDS**
General Funds
**RESTRICTED FUNDS**
IPWSO
Conference/MeetingFund
Diagnostic testing
Digital Lift Grant
ECHO Funding
Friends: CRM System
Frends: Mandarin Translations
Friends: Pakistan Conference
Friends: Travel Grants
Global Genes
Friends: meetings and
workshops
Raising Awareness
Mental Health Workshop
**TOTAL OF FUNDS**|Balance at
1 January
2022
$ 244,819
49,483
5,693
-
19,329
-
-
-
-
-
-
2,354
10,236
87,095
331,914|Income
$ 51,614
304,134
3,391
174
-
13,668
2,959
7,380
1,927
14,229
-
-
-
347,862
399,476|Expenditure
$ (113,875)
(128,534)
(3,005)
(180)
(33,236)
(11,415)
(2,760)
-
(6,244)
(14,851)
-
-
(10,076)
(210,301)
(324,176)|Transfers
in/out
$ 186,320
(225,083)
-
6
13,907
-
(199)
-
4,317
622
20,270
-
(160)
(186,320)
-|Balance at
31
December
2022
$ 368,878|
|---|---|---|---|---|---|
||||||-
6,079
-
-
2,253
-
7,380
-
-
20,270
2,354
-|
||||||38,336|
||||||407,214|
Page 20
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **12. 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.
Conference/Meeting - this fund represents monies received from Friends of IPWSO (USA) to support PWS conferences and workshops around the world.
Diagnostic Testing - this fund represents monies received from OT4B and also from fundraising campaigns and is used to support diagnostic testing for Prader-Willi syndrome.
6th International PWS Caregivers’ Conference 2024, Berlin - this fund represents income to support a conference and also delegate attendance, for those who could not otherwise afford to travel. Funds have been received from the healthcare sector, professional caregiving organisations and also Friends of IPWSO (USA).
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.
Translation and Interpretation Fund - this fund represents monies received from Friends of IPWSO (USA) to translate educational materials into various languages and to provide interpreters at international meetings.
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.
Educational Outreach - this fund represents monies received from Friends of IPWSO (USA) and also from the healthcare industry to support IPWSO’s presence at PWS related international conferences and also to support travel and accommodation for delegates who could not otherwise afford to attend.
Friends Travel scholarship (ASPAE) – this fund represents monies for travel scholarships for delegate attendance at the 14th Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE) in Cameroon.
Friends meetings and workshops - funding from Friends of IPWSO (USA) to fund costs associated with the 3rd PWS International Symposium in Columbia.
Friends: travel scholarship PCC - funds for travel scholarships for delegate attendance at the 14th Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE) in Cameroon.
Friends 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.
Page 21
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **12. STATEMENT OF FUNDS (CONTINUED)**
Friends: filming PPC 2024 conference: this fund represents monies received from Friends of IPWSO (USA) for the filing of the PPC 2024 conference.
Raising Awareness - Funds received from Friends of IPWSO USA including improvements to website functionality and preparing leaflets and collateral, including translations.
Global Genes - funding towards the implementation of a programme to support and improve outreach strategies and address challenges that affect underserved and underrepresented patient communities.
Digital Lift grant - funding to help IPWSO advance its technology.
Travel grants - funding towards travel to the 11th conference.
Mandarin translations - funding towards translation of IPWSO documents into Mandarin.
Mental Health Workshop - Funds received from Friends of IPWSO USA in support of IPWSO's mental health network including an event held in 2022.
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.
## **13. ANALYSIS OF NET ASSETS BETWEEN FUNDS**
## **ANALYSIS OF NET ASSETS BETWEEN FUNDS - CURRENT YEAR**
|Current assets
Creditors due within one year
**TOTAL**|**Restricted**
**funds**
**2023**
**Unrestricted**
**funds**
**2023**
**$**
**$**
74,942
347,877
-
(10,299)
74,942
337,578|**Total**
**funds**
**2023**
**$**
**422,819**
**(10,299)**
**412,520**|
|---|---|---|
Page 22
DocuSign Envelope ID: 514E5355-7FA8-4623-ADB6-124477B5B6E4
## **INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION**
## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2023**
## **13. ANALYSIS OF NET ASSETS BETWEEN FUNDS (CONTINUED)**
## **ANALYSIS OF NET ASSETS BETWEEN FUNDS - PRIOR YEAR**
|Current assets
Creditors due within one year
**TOTAL**|As restated
Restricted
funds
2022
$ 38,336
-
38,336|As restated
Unrestricted
funds
2022
$ 373,944
(5,066)
368,878|As restated
Total funds
2022
$ 412,280
(5,066)
407,214|
|---|---|---|---|
## **14. PENSION COMMITMENTS**
The CIO operates a defined contribution pension scheme. The assets of the scheme are held separately from those of the group in an independently administered fund. The pension cost charge represents contributions payable by the CIO to the fund and amounted to $2,151 (2022 - $1,992). $453 (2022 - $403) were payable to the fund at the balance sheet date and are included in creditors.
## **15. 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 6,979 hours compared with 4,950 hours by staff.
## **16. RELATED PARTY TRANSACTIONS**
During the year, donations totalling $11,990 were received from 7 trustees. There are no conditions attached to these donations.
Page 23