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2020-12-31-accounts

Registered No. 1182873

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION

Financial Statements

For the Year Ended

31 December 2020

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION For the Year Ended 31 December 2020

Contents Page
Legal and Administrative Details 1 - 2
Trustees’ Annual Report 3 - 15
Independent Examiner’s Report 16
Receipts and Payments Account 17
Statement of Assets and Liabilities 18
Notes to the Financial Statements 19

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Legal and Administrative Details for the Year Ended 31 December 2020

Trustees

Professor Anthony John Holland (President) James Arthur O'Brien (Vice-President) Amalia Maria Balart Salamero Dr Verena Wanker-Gutmann Francois Besnier Lynn Marie Garrick (Secretary) Maria Salomea Libura Craig Andrew Moore Marcello Giannubilo Schutzer (Treasurer) Dr Kate Anne Woodcock Marilyn Dumont-Driscoll (Co-opted)

Address

IPWSO Salisbury House Station Road Cambridge CB1 2LA UK

Legal Status

The Charity was formed as a Charitable Incorporated Organisation (CIO) on 09/04/2019 Charity Commission Registration No: 1182873

Bankers

HSBC Bank Plc

Staff

Marguerite Hughes, Chief Executive Officer Shelly Cordner, Project Manager Agnes Hoctor, Communication and Membership Manager Nora McNairney, Project and Operations Manager

Independent Examiner

Mrs J Coplowe FCA Peters, Elworthy & Moore Chartered Accountants Salisbury House Station Road Cambridge CB1 2LA

Website and links

www.ipwso.org office@ipwso.org www.facebook.com/ipwso www.twitter.com/ipwso www.linkedin.com/company/ ipwso www.instagram/ipwso

Page 1

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Administrative information for the Year Ended 31 December 2020

Who we are

Clinical and Scientific Advisory Board

Dan Driscoll (Chair) Susanne Blichfeldt (Vice Chair) Moris Angulo Susie Cassidy Leopold Curfs Marilyn Dumont-Driscoll Urs Eiholzer Janice Forster Tony Holland Charlotte Höybye Shuan-Pei Lin Ann Scheimann Maithé Tauber Harold van Bosse Ex Officio: Marguerite Hughes, CEO, IPWSO

Our advisers

Suzanne Cassidy Nick Finer Joan Gardner Jackie Gill Tony Goldstone David Gordon Janalee Heinemann Engela Honey Tomoko Iwasaki Constanze Lämmer James Loker Esther Maina Colin Pearson Molelekeng Sethuntsa Ellie Silberstein Joyce Whittington

Famcare

Verena Gutmann (Chair) Amalia Balart Susanne Blichfeldt Janice Forster Jackie Gill Linda Gourash Georgina Loughnan Lesley Robertson

Professional Providers and Caregivers Board

Norbert Hödebeck-Stuntebeck (Chair) Mary K. Ziccardi (Co-Chair) Patrice Carroll Larry Genstil Neil Gumley Damien Jones Laura Keane Jackie Mallow Hubert Soyer

Fundraising and Finance Committee

Marcello Schutzer (Chair) Joan Gardner Marguerite Hughes Nora McNairney Craig Moore

Policy and International Liaison Committee Maria Libura (Chair) Dorica Dan Elizabeth Fistein Tony Holland

Conference 2022 (IPWSO team)

Conferences and Workshops Committee

Lynn Garrick (Chair) Susanne Blichfeldt Norbert Hödebeck-Stuntebeck Georgina Loughnan

Website and Publications Committee François Besnier (Chair) Agnes Hoctor Kate Woodcock

Project ECHO® Committee James O’Brien (Chair) Shelly Cordner Tony Holland Nora McNairney

Nora McNairney (Chair) Amalia Balart Dan Driscoll Lynn Garrick Norbert Hödebeck-Stuntebeck Tony Holland Marguerite Hughes Kate Woodcock Gary Brennan (link with PWSAI team) Emma Walsh-Tierney

Honorary President

Jean Phillips-Martinsson

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020

The Trustees present their Annual Report and the financial statements for the year ended 31 December 2020. This report has been prepared in accordance with the provisions under section 133 of the Charities Act 2011 which allows for the preparation of Receipts and Payments accounts by CIO’s with income less than £250,000 and using guidelines made available by the Charity Commission. The CIO is therefore not required to follow the requirements of the new Charity SORP (FRS 102) with regard to content and disclosure.

Objectives

IPWSO works to improve the quality of life for all people with Prader-Willi syndrome and their families worldwide. We provide information and support to caregivers, 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.

The objectives of the CIO are, for the public benefit:

1) to promote the relief and treatment of people with Prader-Willi syndrome, and to provide support and advice for such persons, their families and carers;

2) the advancement of health by promoting, supporting and carrying out charitable research, and to disseminate the results of such research, for the public benefit into the cause and treatment of Prader-Willi syndrome; and 3) to raise awareness about the needs of people with Prader-Willi syndrome through the provision of information.

The CIO and its creation

IPWSO was incorporated in England and Wales as a Charitable Incorporated Organisation (CIO) in 2019. IPWSO’s members voted at EGMs held in October 2019 to transfer all funds, other assets and operations of the original unincorporated IPWSO to IPWSO-CIO and to dissolve the unincorporated IPWSO once these transfers had been completed.

IPWSO’s vision

A world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals.

IPWSO’s mission

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 with people with PWS .

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

President’s report: Professor Tony Holland

2020: A year like no other

None of us could have imagined at the beginning of 2020 what life would be like just a few months later. COVID-19 has determined how we live, whom we see, and what we do. For people with PWS and their families and those providing support, restrictions were imposed and routines changed, exercise was more difficult but life had to go on.

The IPWSO COVID survey, which is still being conducted, indicates that the risks associated with developing COVID for people with PWS do not appear to be as bad as we had feared and now hopefully a vaccine will allow for life to return to what has been described as ‘a new normal’, whatever form that takes.

Over this last year, despite the pandemic, IPWSO has been very busy. After the great success of Cuba, Agnes took on her role as Communication and Membership Manager, later Marguerite became CEO and later still Nora joined as Project and Operations Manager. They are a most extraordinarily productive team. On behalf of all the Trustees I would like to thank them all for their enthusiasm, skill, and ingenuity. What has been achieved in 2020 would not have been possible without them.

Our core work remains providing advice and support to individual families, arranging genetic tests for those unable to get them, and ensuring information is available in a variety of languages. Central to much of what we do has been the work of the Website and Publications Committee, chaired by François Besnier. With Agnes’s support they have overseen the launch of IPWSO’s new website and logo. This is a great achievement.

James O’Brien, as Chair of the Project ECHO ® committee, has seen the launch of our Leadership ECHO bringing together representatives from over 20 countries every two weeks. A Spanish speaking Latin American ECHO is starting in early 2021, this follows a huge amount of work conducted in 2020 by Amalia Balart to bring together the existing and emerging associations in the region to build capacity and reach more families. We will also be launching a Health ECHO and hopefully a Caregivers ECHO. The use of Zoom technology and the ‘All teach all learn’ philosophy of the ECHO Institute in the USA has transformed what IPWSO can do and how it does it.

Lynn Garrick and the Conference and Workshops Committee she chairs started the year with much planned, but face-to-face meetings have not been possible. The Committee has kept in contact with countries that had plans for 2020 and hopefully 2021 can be different.

Maria Libura chairs the Policy and International Liaison Committee that is working on policy development that has a global relevance for people with PWS. IPWSO has also engaged to a much greater extent at an international level particularly through Rare Diseases International and through taking part in initiatives to ensure that people with rare diseases have full universal health coverage worldwide.

Central to the work of IPWSO is the Fundraising and Finance Committee chaired by Marcello Schutzer. Their guidance and wisdom on all financial matters has been invaluable. Thank you to all the Chairs and to the committee members.

Our standing committees: the Clinical and Scientific Advisory Board (CSAB) chaired by Dan Driscoll; the Professional Providers and Caregivers Board (PPCB) chaired by Norbert Hödebeck-Stuntebeck; and Famcare previously chaired by Amalia Balart and now by Verena Gutmann ensure that questions are answered, best practice developed and disseminated, and up-to-date information is provided. My thanks to the Chairs and to the standing committee members.

During the year we have received the most generous support from the Friends of IPWSO (USA) chaired by Joan Gardner, and also commitments for specific projects from Pfizer and Novo Nordisk. My thanks to them, their support has made much of what we have done possible. This year was also the first year we received a most generous donation from our Honorary President, Jean Phillips-Martinsson in memory of her son Anders and husband, Sven. Jean wishes to continue to support IPWSO in this way and we have established a fund named in her honour – Jean, thank you.

A big welcome to the Russian Federation and Hungary both of whom joined IPWSO this year. We look forward getting to know their membership and working with them.

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

President’s report: Professor Tony Holland (continued)

My thanks to many others: the IPWSO advisers, particularly Colin Pearson and David Gordon have given us valuable legal advice; to volunteers, such as Jackie Gill who helped develop our mandatory charity policies and Tegan Elliott who as an intern from the London School of Economics, prepared a report on international institutions; and a special thank you to the Board of Trustees who are inspirational. Finally IPWSO is part of a larger family. I am grateful to our members for their support and for being part of IPWSO .

Chief Executive Officer’s report: Marguerite Hughes

A commitment to unite the global PWS community has always been central to IPWSO’s mission. As a result of the global pandemic, 2020 has indeed been a year when the world came together. With rapidly rising mortality rates, we were reminded how closely interlinked our communities are, how none of us are safe until we are all protected, and how international cooperation, human endeavour and a commitment to scientific discovery can offer hope of a better future.

In common with other organisations, some of IPWSO’s activities were affected by COVID-19. We deferred our plans to support in person local conferences and workshops, and to host educational booths at medical conferences.

Nonetheless, 2020 was busy, productive and marked an expansion of IPWSO’s activities. With great credit due to IPWSO’s diagnostic testing partner, the Baschirotto Institute for Rare Disorders, our free diagnostic testing service remained available throughout the year. Our IPWSO ECHO® program began in April and as a result of a generous sponsorship commitment from Pfizer will grow and continue until at least early 2022.

During 2020, IPWSO expanded its role in international advocacy and IPWSO representatives participated in many online events aimed at improving the position of people with PWS and other rare disorders around the world.

IPWSO grew its research role with an ongoing study into how people with PWS have been affected by COVID, continuing work on choice and control for people with PWS, and a new research project focusing on residential care for people with PWS.

IPWSO’s first full year as a registered charity in the UK required us to commit considerable time to aligning our governance systems to the requirements of the Charity Commission. 2020 also saw the creation of a new strategic plan that will guide IPWSO’s work for the next three years and the development of our new website, which we hope will enable us to reach more people who need our help around the world.

IPWSO began 2020 with one part-time employee. It finishes the year with two part-time and one full-time employees. While the work carried out by IPWSO’s employees has been instrumental to its achievements, as Figure 1 shows, IPWSO remains primarily reliant on the skills, commitment and energy of its volunteers. These include its Trustees, Advisors, Clinical and Scientific Advisory Board Members, Professional Providers and Caregivers Board Members, Famcare Board Members and many others who volunteer on its behalf. Without this tremendous voluntary effort, IPWSO simply could not survive.

IPWSO also could not survive without funding. Sincere thanks to all the PWS associations that paid membership subscriptions and gave donations, the many individuals who provided donations and organised fundraisers, Friends of IPWSO (USA), Interaction, and, in particular, Jean Phillips-Martinsson whose very generous donation enabled IPWSO to establish the Jean Phillips-Martinsson Fund in honour of Jean’s late husband, Sven, and her late son, Anders.

In 2021 IPWSO will mark its 30[th] birthday. We will do so with pride at what has been achieved, yet conscious that people with PWS and their families continue to face serious challenges around the world.

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

There is much work still to be done.

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Figure 1
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Treasurer’s report: Marcello Schutzer

Financial Report for Year 2020

Despite all the challenges the world faced in Year 2020, IPWSO was able to maintain its commitment to the global PWS community. The organization had to adapt its initiatives to a new world environment, and while we were not able to support conferences and workshops, we successfully launched our IPWSO ECHO program in April.

Since the beginning of 2020, we started managing our budget in two distinct groups: Restricted Budget, where the income generated by grants and donations is associated with specific projects and initiatives; and Unrestricted Budget, where the income is allocated according to the priorities defined by our Board of Trustees.

Below there is a summary of our 2020 financial results, divided by these two groups.

The grants from Friends of IPWSO are listed in USD according to their original grant values. All other amounts are in USD equivalent, converted whenever revenue/expenses were in GBP or Euros using the prevailing rate on 31 December 2020.

Restricted Budget

During 2020, IPWSO received the following grants for specific projects:

Unrestricted Budget

During 2020, IPWSO received unrestricted sources of income in the amount of $90,901, as detailed below:

Total expenses (from unrestricted sources of income) incurred during 2020 amounted to $52,671, leaving a surplus of $38,230. These expenses were incurred as follows:

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

Treasurer’s report: Marcello Schutzer (continued)

At the end of 2020, IPWSO maintained the following balances in our accounts:

In addition, at the end of 2020 IPWSO maintained 400 shares of the Compass Group plc, donated by Jean PhillipsMartinsson, valued at USD 18.73/share as of 31 December 2020.

Thank you to all of IPWSO’s members who paid subscription fees during this difficult year, and thanks to those who also contributed with voluntary donations.

I also want to extend my sincere thank you to Friends of IPWSO (USA) and Interaction, with their support to key initiatives such as educational conferences, the IPWSO website and diagnostic testing.

Thanks to Jean Phillips-Martinsson, for her very generous donation that will enable IPWSO to keep serving the global PWS community and filing our families and members with hope and love.

And a special thanks to Tony Holland and Marguerite Hughes, for their leadership and unwavering commitment to IPWSO.

Clinical and Scientific Advisory Board: Dan Driscoll

Scientific papers

The CSAB has continued to prepare pdf files listing scientific papers published over the previous three month period in peer reviewed journals. These lists have been circulated widely at the international level by the IPWSO office. The range of research being published is extensive and includes basic science and a broad range of clinical topics from genetics, to endocrinology, and to behaviour and mental health. There are papers reporting on clinical trials of specific interventions and the application of some of the advanced neuroimaging techniques.

A special note of thanks should go out to Joyce Whittington for her help in preparing this material. The quarterly collection of papers is available on our website: https://ipwso.org/information-for-medical-professionals/researchpapers/

Advice

The CSAB developed a standardized form for queries. During this past year members of the CSAB have responded to requests for advice on a number of topics.

The CSAB put together various consensus documents which are available for our international audience.

Advocacy

The CSAB wrote a Letter to the Editor which has been accepted in the international journal Orphanet Journal of Rare Diseases advocating for the use of growth hormone therapy in adults with PWS.

IPWSO meeting in Ireland, July 2022

Planning has commenced for the International meeting in Ireland in 2022.

Monthly meetings

The members of the CSAB convene monthly by Zoom to discuss various pertinent topics.

Other matters

Numerous research clinical trials involving PWS are currently being conducted in different parts of the world. The CSAB is keeping abreast of these trials and will report on promising results as they become available.

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

Famcare Board: Verena Gutmann

As for all of us, due to the pandemic this year was a special challenge!

Our Board member Georgina Loughnan was quick enough to publish in a little while after the first lock down a Famcare article titled COVID-19 and PWS Guidance, to give some ideas about how to monitor the health of people with PWS and inform them about the impact of the virus on their lives. This year enriched our experiences about managing the lives of individuals with PWS during a challenging, global period. We learned about the benefits and the difficult consequences for families of people with PWS of being in “lockdown”. We had the chance to gather more “know how’s”.

In the summer I was asked to take over from Amalia Balart as the Famcare chair, and I agreed with the confirmation of the former committee to go on acting like a team.

One of the COVID-19 benefits is the increase of knowledge and experience with technical support like Zoom conferences, webinars, social media presence and of course the possibility of IPWSO’s new ECHO Project, to spread PWS knowledge around the world. This new challenge goes hand in hand with the duties of Famcare. We will try to work on this to help families in many corners of the world to have access to practical knowledge about PWS.

We will also continue to follow the well known path of making public articles which we consider reasonable and worthwhile. At the same time, we want to give energy to translating existing articles. All Famcare articles remain incredibly useful resources in managing PWS in daily life. We continue to look for new ways to present them again for example in social media.

If you know somebody who could help translate the Famcare articles into other languages, or to help with proofreading, please let us know!

In 2020 we held three online meetings, and we are proud to be working with, amongst others, María Elvira García, a very engaged mother from Colombia.

New articles are in the works and we hope that all our aims and visions can be achieved!

Professional Providers and Caregivers Board: Norbert Hödebeck-Stuntebeck

The routine three-year cycle of the PPCB meant a focus on planning for 2020, with no major events or conferences. And that's what we focused on initially with planning for the next three-day Caregivers Conference in Berlin, Germany 2021 with lectures and workshops.

But, towards the end of the year it became increasingly clear that due to the ongoing COVID pandemic, implementation of the Caregivers Conference as an event in person was no longer justifiable and the cancellation of the Caregivers Conference 2021 was the unfortunately necessary consequence. This makes us sad, because since the IPWSO conference in Romania in 2007 there have been events specially tailored to caregivers at regular intervals. In addition to the professional input, it was above all the personal exchange that pioneered the further development of ideas and approaches in this field.

However, as it is well known, in every crisis (or rejection) there is also an opportunity. And so the year 2020 ends as it began, with planning. The question arises: How can we, specifically geared to the focus of the caregivers, shape the expansion of knowledge, the development of new ideas and approaches in the care of people with the PWS under the globally changed framework conditions in the future? Here we are now working on ideas that keep old, tried and tested paths (if they are possible) and enable new constructive thoughts and approaches (online).

The aim always remains to provide the people who are in direct support of people with the PWS with the most qualified tools possible and to offer them for use across national borders and to improve implementation through training courses. In addition to these activities, another focus of the work of the PPCB was the regular online meetings in 2020 and spreading knowledge into the countries our members are based in and beyond.

It was also an intense concern to take into account the special perspectives, visions and needs of the group of caregivers in the entire “PWS family” during the IPWSO board meetings, in a very dynamic year for the organisation.

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

Professional Providers and Caregivers Board: Norbert Hödebeck-Stuntebeck (continued)

Finally, let me say a few words on my own behalf, as I will hand over the role of Chairman of the PPCB to my successor in the middle of next year (at what would have been the “Berlin Conference”) and go on as a regular member of PPCB. During the entire time since the PPCB was founded (in 2010 in Taipei, Taiwan), it has been a special honour for me to be able to work with so many committed and competent PPCB board members, IPWSO board members and presidents. Over this period we as PPCB have succeeded in giving the caregivers a visible and permanent place in the “PWS family” in addition to people with the PWS, parents and scientists and clinicians in IPWSO.

Thank you very much for so many positive experiences and the many great people I was able to get to come into contact with during this entire time.

My special thanks go to the current PPCB board members: Mary K. Ziccardi (Co-Chair), Hubert Soyer, Larry Genstil, Jackie Mallow, Damien Jones, Neil Gumley, Laura Keane, and Patrice Carroll.

Projects

Conferences and workshops: Lynn Garrick

The Conferences and Workshops Committee has not been as busy as it would have liked to be this year due to the limitations of COVID. We did receive a total of nine applications for assistance to host workshops. The committee remains in contact with the applicants and is hopeful that virtual conferences or small workshops will be possible in some cases. The committee is developing a virtual library where countries wishing to host a conference or workshop can access different presentations on various PWS topics that can be used for virtual conferences so applicants can tailor the workshops to their specific interests. The committee remains committed to assisting with in-person meetings when travel is allowed and safe and will happily announce when this is possible.

The Asociación Colombiana Síndrome de Prader-Willi organized an impressive series of online seminars during 2020. Norbert Hödebeck-Stuntebeck and other members of the Professional Providers and Caregivers Board were delighted to be involved. They spoke on a range of subjects, including preventing crises and managing social and emotional difficulties.

In November, Prader-Willi Syndrome Malaysia hosted a conference bringing together 200 participants, including parents, people with PWS, allied health professionals, and students, who were all able to interact with a panel of local and international IPWSO speakers, including our Vice President James O'Brien. Participants attended from Malaysia, with overseas delegates joining remotely from Japan, Vietnam, Australia, New Zealand, Hong Kong, Bangladesh, Thailand, India, US, Peru, Russia, and Lebanon. It took eight months of hard planning for the association during a challenging and uncertain year, and we were delighted to see the event be such a success.

In December Tünde Liplin and the Hungarian PWS association hosted an online conference, inviting Susanne Blichfeldt to present on behalf of IPWSO. The event was attended by 40 participants, including members of 24 families and 2 endocrinologists. The conference covered a wide range of topics about PWS and Susanne responded to many questions including concerning genetic subtypes, symptoms and treatments.

The 11[th] International Prader-Willi Syndrome Organisation Conference, University of Limerick campus, Ireland, 6 – 10 July 2022: Nora McNairney

In partnership with PWSAI, IPWSO is delighted to host the 11[th] International Prader-Willi Syndrome Conference in Limerick, Ireland from 6 -10 July 2022.

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

The Planning Committee, spearheaded by representatives from the following programmes met on five occasions throughout the year and undertook a site visit in early Spring:

Despite the uncertainty with COVID-19, the Committee has focused on tentative arrangements for an in-person conference, whilst also exploring what a virtual conference experience might deliver.

Committee Members from each of the programmes have also been meeting to consider the format, content, and to identify speakers.

Giving recognition to the fact that PWS is a complex, genetically determined, multi-disciplinary disorder that requires different skills and perspectives, and ideally a multi-disciplinary approach, we have introduced an additional programme for 2022. This one-day inter-disciplinary programme is aimed at both health and allied professionals, including but not limited to teachers, physiotherapists, speech therapists, psychologists and social workers, and offers these professionals the opportunity to understand the need for a holistic approach to the health and social care requirements of people living with PWS.

Planning is underway for an event "stepping up for PWS" that will occur over Saturday and Sunday of the conference. This event will be for people with PWS aged 18 and older. There will be classes on various topics during the morning and activities at the university's activity centre in the afternoon. This programme will be a first of its kind to be offered at an IPWSO international conference. We are very excited to offer this and look forward to sharing more information as the planning advances.

An exciting programme of social activities is planned too, and we will host a Members’ event to provide an opportunity for newer groups to meet with more established associations.

A huge thank you to the Committee Members for all their work; our International Conference takes a great deal of volunteer time, commitment and energy and is made more difficult in these uncertain and frustrating times, but is so rewarding when we witness how it reinvigorates practice, provides opportunities for new friendships and supports, and disseminates learning and new ways of working.

Whatever the format, we encourage you to Save the Date and visit our website to keep appraised of developments.

And, we do hope to see you in person, in Limerick, in 2022!

Project ECHO®: James O’Brien

In 2019 we reported on our plans to develop an online PWS telementoring community, designed specifically for people who wish to grow and develop PWS associations and build knowledge and understanding of the syndrome in their countries. In April 2020 we launched the first pilot session, the IPWSO Leadership ECHO®. Over the course of nine sessions, we brought together subject experts, PWS associations, parents, health and allied professionals and professional caregivers from across the world to discuss and debate a wide range of subjects which impact on the lives of people living with PWS and their families. We discussed the syndrome, best practice, service developments, social care and employment issues as well as how, we as leaders, or potential leaders, can foster links and create networks to assist us to make positive changes in our countries.

We received news in the Autumn of 2020 that our application to Pfizer Inc., for a Medical Educational Grant to help drive this initiative forward, was successful, enabling us to expand and develop our ECHO programme. We launched a new round of the Leadership ECHO in December, a Health ECHO is planned for February 2021 and an ECHO specifically for Latin America and Spanish speaking countries will start in March.

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

Project ECHO®: James O’Brien (continued)

The Leadership ECHO programme has attracted PWS associations from across 25 countries and on average 22 participants attended each Session. The feedback illustrates the benefits to be derived from coming together to build networks and share experiences:

“Learning about good practice in other countries gives me great hope.”

“I loved this presentation and I will share it with my daughter's teachers and with other parents.”

“Today’s topic and its discussion on the transition from school to adult life is so relevant to children with PWS. The odds seem insurmountable at first, but when we hear them presented in the IPWSO Leadership ECHO®, it shows that every country faces the same predicament. Some have started the race, and some are still preparing to do so.”

“Every session was a big help for me! Thank you all!”

However, there is still much to do to cover all the topics that participants have requested and to expand our reach across the continents.

We are grateful to all those subject experts who gave presentations over the course of the year. They generously shared their knowledge and understanding and, by permitting us to capture their presentations into short films, amplify our capacity to deliver best-in-practice care, current and knowledgeable information on PWS.

Very many thanks to Tony Holland, Georgina Loughnan and Amalia Balart who are core to the success of the ECHO project and volunteer a great number of hours; their tasks are many and varied - planning, facilitating, leading and chairing. Their expertise and knowledge keep us on track and challenge us to think about how we can best utilise our resources to build capacity and better serve people with PWS in our countries.

Thanks also to David Gordon and Colin Pearson who provided essential legal advice and to Janelle McIntosh, PWS Australia, who assisted in the early stages of development.

We are indebted to Pfizer Inc. for their financial support. Marguerite Hughes worked very hard to secure the funding, without which we would not have been able to employ our two Project Managers, Shelly Cordner and Nora McNairney - Shelly and Nora will provide the equivalent hours for one full time member of staff.

We also extend our thanks to the University of New Mexico and the ECHO® Project for providing us with the framework and Zoom technology that makes this initiative possible. Ellie Cordova, as our Account Representative at ECHO, has been a great resource providing guidance and ensuring we remain faithful to the ECHO model.

Finally, very many thanks to our participants whose contributions - insights and enthusiasm - encourage and sustain what is genuinely becoming a global PWS ECHO community, of which IPWSO can be deservedly proud.

Policy and research: Maria Libura

COVID-19 study

Early on in the COVID-19 crisis Professor Tony Holland and the Clinical and Scientific Advisory Board set up a study into the effects of the COVID-19 infection on people with PWS. The results of the survey are still coming in and are being analysed by Dr Joyce Whittington at the University of Cambridge.

The extent to which COVID-19 is affecting us varies from country to country, we have seen over 40 responses so far and generally the effect of COVID-19 on people with PWS has been mild, which is very positive news, but surveys are still coming in and the more answers we have across as many countries as possible the more we will learn.

The survey was published in English, French, German and Spanish and is to be completed by a parent or carer. We hope that the results will help us understand more about how COVID-19 affects people with PWS so we can be well prepared both now and in the future.

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INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

Research on specialist services for people with PWS

There is significant anecdotal evidence that PWS-specific residential services bring benefit and are necessary for many people with PWS if they are to have satisfied, socially integrated and healthy lives. However, there are very few peer-reviewed evaluations of these services. Without formal empirical evidence of efficacy, it has proved difficult for countries who lack such services to argue that they are necessary, and even in many countries where such services exist it has proved difficult to develop additional services.

By working with care providers from around the world, IPWSO aims to evaluate PWS residential services.

Choice and control: the use of restrictive practices in the care of people with Prader-Willi syndrome

IPWSO and Elizabeth Fistein of the University of Cambridge are conducting research to find out more about people’s views on the best way to support healthy lifestyles for people with Prader-Willi syndrome, whilst ensuring their rights are respected.

A huge thank you to everyone who has participated in the survey on supporting people with PWS to manage hyperphagia. We have had responses from people from all around the world and it has been wonderful, and extremely informative, to hear from you all.

The research team is now in the process of analysing all of the responses, in order to produce a report that will feed into new draft guidelines. We plan to circulate the first draft of the guidelines in the early part of 2021 and look forward to hearing your views and incorporating your perspectives.

We plan to use the results of this research to help us to develop guidelines on how to support healthy lifestyles for people with Prader-Willi syndrome, whilst ensuring their rights are respected.

International advocacy

International advocacy on behalf of people with PWS and their families is a role that IPWSO is uniquely placed to fulfil. While advocacy and engagement with international bodies have always formed part of IPWSO’s work, during 2020 the IPWSO Trustees decided to intensify its efforts in this area.

This work was given impetus by Tegan Elliott, an IPWSO intern who produced a report on how IPWSO could maximise its impact at a global level. This included consideration of organisations that IPWSO could collaborate with and identities that may be relevant to people with PWS: people with a rare disorder; people with a genetic cause of obesity; people with a syndrome associated with endocrine abnormalities; and people with developmental disabilities.

By the end of 2020 IPWSO had established formal links with EURORDIS, Global Genes, Healthcare Information for all (HIFA), the International Alliance of Patients’ Organizations (IAPO), the International Conference of Rare Diseases and Orphan Drugs (ICORD) and Rare Diseases International (RDI).

As part of this work IPWSO was delighted to support Universal Health Coverage day in December and to participate in RDI’s consultation process on the proposed WHO Collaborative Global Network for Rare Disease Centres of Excellence. Through our representation on the Global Genes RARE Global Advocacy Leadership Council, IPWSO expanded its influence into other rare disease communities, sharing our knowledge and awareness and learning new organisational skills and advocacy practices.

IPWSO also continued its collaborations with the Prader-Willi Syndrome Clinical Trial Consortium (PWS-CTC), and a range of scientific societies, including the European Society of Endocrinology (ESE), at whose September conference IPWSO held its first ever virtual awareness booth.

While looking forward to continued engagement and collaboration with international partners during 2021, we remain constantly aware that it is only through our close connections with our members and contacts that IPWSO is able to represent the needs of our community and explain the challenges facing people with rare disorders in general. For that reason, our heightened focus on international advocacy is matched by our commitment to fully understand the realities facing our members and contacts, whatever their experiences and wherever they live.

Page 12

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

Diagnostic testing at the Baschirotto Institute for Rare Disorders (BIRD)

For the 18th consecutive year IPWSO offered free diagnostic testing for PWS to those who are unable to access testing in their own countries. This service was provided in collaboration with the Baschirotto Institute for Rare Diseases (BIRD), which is based in Vicenza, Italy.

Despite COVID and the challenges it brought, the Baschirotto Institute remained fully operational throughout 2020, for which we are very grateful.

All 20 diagnostic tests conducted on behalf of IPWSO in 2020 were paid for through a generous grant from Interaction.

Since the inception of its free diagnostic testing service, IPWSO has funded testing for over 500 families around the world. As far as we are aware, IPWSO is the only organisation that provides this service for PWS or any other rare disease.

Website and publications: François Besnier

The Website and Publications Committee has been working mainly on two topics over the past year. The first one was redeveloping a new website and repositioning and updating the IPWSO brand. The second one was reflection and strategy about publications and plans for the future.

Website and brand

In addressing our website we wanted to better reflect our big ambitions to provide high quality information and support to families, associations and professionals around the world. Our website is a key tool for doing this and thanks to funding from Friends of IPWSO (USA) we have successfully redeveloped our site to make it much easier for visitors to find and use our resources.

Knowing the importance of social media and that many people access information on their phones we knew that we also had to improve how we presented our information. At the same time as redeveloping our website we have also created a new logo and IPWSO colours to highlight our role as an international organisation and give a fresh, modern and appealing look to our materials.

Our new logo symbol is formed of six shapes representing the continents we work with across the world and the global reach of IPWSO. They are linked to communicate our aims, goals and achievements in bringing PWS communities together. There are six distinct colours to show that Prader-Willi syndrome is not a selective condition – it affects all cultures, ethnic groups and genders equally.

The new website was launched at the end of November and our new image is also reflected across our social media profiles.

Publications and plans for the future

IPWSO has gathered since its creation a set of rich materials, produced by our experts and advisers. The committee has started to audit these existing materials in order to identify the possible gaps, duplication and papers which are now redundant.

The committee has worked with the Communication and Membership Manager to oversee the development and implementation of a coherent design for all publications in order to make our information easier and more attractive to access and read. The language and translation issues question has been addressed for a better coverage of the countries’ needs.

The committee has set up guidelines for the development of a coherent communication and publication strategy using various media going forward including the website, emails, newsletters and social media.

Page 13

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Trustees’ Annual Report for the Year Ended 31 December 2020 (continued)

Advice service: Agnes Hoctor

In 2020 our advice service responded to 70 enquiries from people around the world covering a wide range of different issues. We heard from parents and siblings, desperate for information and support, people with PWS with questions about their own lives, medical professionals and caregivers looking for expert knowledge to support their patients and clients.

Enquiries came from 35 different countries including many from Eastern Europe and South America. Some came from countries which have IPWSO member associations and we were happily able to pass the correspondent over to their national experts, but the majority came from countries with no central PWS association and little expert knowledge. With IPWSO contacts in over 100 countries worldwide we were able to use our network to link people up and direct them to useful information and resources.

The main theme of the enquiries was of families wanting support, to be linked up with other parents or professionals in their country.

Responding to enquiries is a team effort and we must give many thanks to the IPWSO Boards and Advisors for all their valuable input in drafting these responses.

The advice service continues to be an important part of our work and feeds into other areas such as the importance of developing our Project ECHO ® support, translated guides and workshops in diverse parts of the world.

What is Prader-Willi syndrome?

Prader-Willi syndrome (PWS) is a complex genetic disorder characterised by low muscle tone and failure to thrive at birth, and later evidence of short stature, intellectual disabilities, behavioural and psychiatric challenges, and the development of a chronic feeling of hunger that results in over-eating and in severe obesity and associated health problems.

Multiple studies have shown that between 1 in 15,000 to 30,000 people in the populations studied have PWS, which occurs equally across all races and both sexes, although life-expectancy and population prevalence globally may differ depending on the availability of an early diagnosis and of information, treatments, services and supports.

IPWSO is committed to supporting all people with PWS and their families, whatever their needs, and wherever they live.

Support IPWSO

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INTERNATIONAL PRADER.WILLI SYNDROME ORGANISATION Trustees. Annual Report for the Year Ended 31 December 2020 l¢ondnugd) FiMncial Revlew and Reser4es Policy During the pen.od the CIO received restricted income of £40.CIJ5 (2019.. £1,634) aThJ unrestricted income from dOnat￿n9, subscriptions and grants of £66.093 {2019'. £149,713). EXpendthj￿ in Ihe period amounted to £26.504 12019.. £nill from restncied funds and £43.32812019". £28.994) from unrestricled funds. As al 31 December 2020 there w9re restricted fijnds carrd forward of £15.135 12019.. £1.6341 and unrestn.cted fijnds of £143,484 12019.. £120,719). The Trustees are $8lisfied that the of free cash funds, cuffentty £143.484. 1$ adequate to meet the objects of the CIO. The Trustees deuded that a reserve of S1(￿.(XX) las at 31 December 2020". £73.186) shoLtld be aimed for and, in light of uncertainty to COVID, irueased the reserve fvjU￿ to $125.000 las al 31 December 2020.. £91,850) in May 2020. Funds al 31 D￿ember 2020 ex(e¢Jed the reserve figure tyjt the Truslees expect the free cash reseNes to be utilised to o)ver a wtenb"81 shortfall in fiJnding for 2021. Appolntment of TnrJt￿S The Trusteès who held Offi￿ dwing the period were: Amalia Maria Balart Salamero Professor Anthony John HollaThJ Craig Andrew Moore Francois Besnier James Arthur O'Brien Dr Kate Anne Wood¢od( Lynn Marie Garrick Marcello Giannubilo SchiJ12er Maria Salomea Lib(tra Dr Vorena Wanker-Gulmann Marilyn DuMont-D￿OII (C￿opted) The Board ol Trustees endeavours to appoint TNstees necessary rngard lo the Skills, knowledge and experience requlrod for the post. New Trustees ore made aware of th*r ￿SPOnsI￿1￿￿ under charity law. ststom•nt of TrustoeB' Re•poMlblllll•• The Trustees are responsible for prgpgring the annual rew)rt and ￿ancial stalgments in accordance with applicable law and Unite(l Kingdom Accy)unling Stsndards (Uniied KiThJdom G6neralty Accepted A￿untIng Practice). L8w applicable to Charilies in England and Walgs rgquiros the TnJslae8 to prepare financlal statgments for oach financial period which give o true and fair view ol ihe State ol affairs of the CIO and of the incoming resources and 8pplication ol resources of the CIO for that pgriod. In wep8rirvJ these financial stslements, Ihe trustees shouk follow best praCt￿e and.. Sgl&cl suitabte accounting and Ih9n aFfdy them c>)nsislenty". Observe the methods and principles in the Charit￿$ SORP., Make judgements and ostirnates that are rea$￿8b￿ and prudent.. aThJ The tTuslees a￿ reswn$ible for keeping Pfoper a￿O￿n1•ng records which d¢5dose with ￿asOnable accuracy the financial position ol the CIO and which enable Ihem to ascertain the fmanaal position of the CIO and which enable them to ensure that the finanrAal statements ￿)mplY with the Charities Ad 2011. supporting ￿gulationS and the Trust Deed. They are 8180 responsible for sateguardkng the assets of the CIO and hen￿ for taking reasonable steps fof the prevention and detectK)n of fraud and other wregulariiEs. Approved by the trustres and signed on their beham by: Z3 Page 15

Independent Examiner’s Report to the Trustees of INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION for the Year Ended 31 December 2020

I report on the accounts of the CIO for the year ended 31 December 2020 which are set out on pages 17 to 19.

RESPECTIVE RESPONSIBILITIES OF TRUSTEES AND EXAMINER

The CIO’s trustees are responsible for the preparation of the accounts. The CIO’s trustees consider that an audit is not required for this period under section 144(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed.

It is my responsibility to:

BASIS OF INDEPENDENT EXAMINER’S STATEMENT

My examination was carried out in accordance with general Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the CIO and a comparison of the accounts prepared with those records. It also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a ‘true and fair view’ and the report is limited to those matters set out in the statement below.

INDEPENDENT EXAMINER’S STATEMENT

In connection with my examination, no matter has come to my attention:

have not been met; or

Mrs J Coplowe FCA For and on behalf of PETERS, ELWORTHY & MOORE

Chartered Accountants Cambridge

Date:[2 March 2021 ]

Page.. 16

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Receipts and Payments Account for the year ended 31 December 2020

2020 2020 2020 2019 2019 2019
Restricted Unrestricted Total Restricted Unrestricted Total
£ £ £ £ £ £
Receipts
Donations - Corporate 3,143 - 3,143 - 2,389 2,389
Donations - Foundations 36,862 - 36,862 1,634 23,471 25,105
Donations - Members - 12,564 12,564 - - -
Subscriptions - 6,474 6,474 - 446 446
Other Fundraising and Donations - 7,993 7,993 - 917 917
Founding donations - - - - 122,490 122,490
Proceeds from sale of investments - 39,062 39,062 - - -
Total receipts for period 40,005 66,093 106,098 1,634 149,713 151,347
Payments
10thIPWSO conference costs - 1,023 1,023 - 19,016 19,016
11thIPWSO conference costs - - - - 40 40
Diagnostic testing services 2,130 - 2,130 - - -
Clinical trial consortium - 815 815 - - -
Website, IT software & consumables 14,118 650 14,768 - 22 22
Project ECHO costs - 806 806 - - -
Salaries 10,256 30,642 40,898 - 4,823 4,823
Pension costs - 517 517 - 91 91
Travel scholarships - - - - 2,827 2,827
Bank charges - 235 235 - 460 460
Accountancy fees - 5,839 5,839 - 59 59
Foreign exchange - (235) (235) - 1,248 1,248
Insurance - 619 619 - 188 188
Advertising and marketing - 490 490 - - -
Office costs - 1,223 1,223 - 220 220
Miscellaneous costs - 704 704 - - -
Total payments for period 26,504 43,328 69,832 - 28,994 28,994
Net receipts being net movement in funds 13,501 22,765 36,266 1,634 120,719 122,353
Cash funds brought forward 1,634 120,719 122,353 - - -
Cash funds at the period end 15,135 143,484 158,619 1,634 120,719 122,353
Page 17

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Statement of A88•ts and Liabilitiè• As at 31 Dgcember 2020 2020 Rgstrlctod 2020 Unrnstricted 2020 Totsl 2019 R￿1￿¢￿d 2019 Unr•strlctsd 2019 Total Monetary Assets HSBC GBP HSBC EUR HSBC USD 14,123 53.029 62,CQ7 43,583 1,634 48.722 56,383 15.614 50.356 56.383 15.614 62,007 42,571 1,012 C*$h fund• #t •nd of th• p•rlod: Total Mongtary A8s•ts 15,135 143.484 158,619 1,634 120.719 122.353 Llabllltl Independent Examln8llon & Accountsncy lee for 2020 B(￿kkeepIng fee PAYE Payable Penslons Payable 2.220 2,220 2.160 2.180 228 275 173 228 275 173 150 186 68 150 186 Total Llabllltle• Non Mon•t•ry A88•ts Inve81menl assets Inote 61 5.452 5.4S2 Total Non Mongtary A880ts S,452 5.452 Approved by the Trustw• and •lgned on thelf bohalf by: 8110 Gl8nnubllo S¢hutzer •. Treasurgr Page 18

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION Notes to the Financial Statements Year Ended 31 December 2020

1 Accounting Policies

The financial statements have been prepared under Section 133 of the Charities Act 2011 and in accordance with Charity Commission guidance.

Particular accounting policies adopted by the trustees are described below.

a) Income and Expenditure

Income and expenditure is accounted for on a receipts and payments basis.

b) Investments

Investments are included at market value at the year end.

2 Trustees’ Expenses

In 2020 no Trustees received reimbursement of travel and accommodation expenses during the period totalling (2019: four Trustees totalling £3,849 all incurred attending the 10[th] IPWSO conference).

3 Related Party Transactions

There have been no related party transactions during the period ended 31 December 2020.

4 Restricted Funds

Restricted funds include the following movements:

Balance b/f
£
IPWSO Meeting Fund
1,634
Website Fund
-
Testing Fund
-
1,634		 Income
Expenditure
Balance c/f
£
£
£
12,488
-
14,122
24,374
(24,374)
-
3,143
(2,130)
1,013
40,005
(26,504)
15,135

The IPWSO Meeting Fund represents monies to be used to support PWS conferences and workshops around the world.

The Website Fund represents donations received specifically for work on the IPWSO website and logo. The Testing Fund represents money from Interaction to be used for diagnostic testing costs.

5 11[th] IPWSO conference

The 11[th] IPWSO conference will be held in July 2022. Costs relating to this event have been incurred and paid in advance.

6 Investments

As at 31 December 2020 the IPWSO held 400 ordinary shares in Compass Group Plc, valued at £5,452.

7 Jean Phillips-Martinsson Fund

The Jean Phillips-Martinsson Fund was established in 2020 to support IPWSO's mission 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 with people with PWS. It is envisaged that this Fund will support a wide range of IPWSO projects and strengthen IPWSO's capacity and long-term sustainability. IPWSO is very grateful to Jean Phillips-Martinsson, its founder and Honorary President, for her generosity in creating this fund in memory of her son, Anders, and husband, Sven.

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