Board of Trustees
Nick Finer
President and Chair
Nick lives in the UK and is a former honorary professor of clinical medicine at University College London. Nick trained as a clinical academic endocrinologist and over 3 decades developed multidisciplinary obesity services at Guy’s, Luton, Cambridge, and University College London hospitals. From 2016-2022, Nick was Senior Principal Clinical Scientist, Global Medical Affairs, with Novo Nordisk in Denmark. His research on obesity and its related complications, is represented by 200 peer-reviewed papers and reviews, and more than 23 book chapters. Nick has been IPWSO President and Chair since 2025.
Karin Clarke
Vice-President
Karin Clarke is the Chairperson of the Prader-Willi Syndrome Support Group of South Africa. She graduated with a Bachelor’s degree in economics and psychology from the University of Cape Town (UCT). She worked in Marketing Research, at Kantar TNS until her daughter with PWS was 2 years old. In 2011 when her daughter was four years old and was finally diagnosed with PWS she joined the PWS Association of South Africa. In 2015 she started the Facebook page for PWS SA and became more involved. In 2017 she became the Chairperson and the structure was changed to a support group under Rare Diseases SA (RDSA). She works with RDSA as a rare ambassador for PWS. The three main areas of focus for the support group are support, education and advocacy. The core form of support is the WhatsApp group due to the large geographical distances in South Africa. Due to the very low levels of diagnosis of PWS elsewhere in Africa families from other southern and central African countries are welcomed to join PWS SA as there are no support groups for PWS in southern and central Africa. Connections are being made through Rare-Africa (also predominantly run by RDSA) to educate on PWS elsewhere in Africa. Karin has been a Trustee of IPWSO since 2022.
Lantz Yap
Secretary
Lantz Yap is a 2 term exco and life member of the PWS Association in Malaysia. He lives in the capital city of Kuala Lumpur with his wife, Jeannie and two children. His son, Ken aged 26 was diagnosed with PWS at birth. He represented Malaysia in bidding for the IPWSO conference in Cuba in 2019. During the Covid-19 pandemic in 2020, he conceptualized the inaugural two day PWS National Webinar which impacted over 200 participants from 12 countries focusing on building a supportive allied health network including funding and sponsorship as well. In the following year, Lantz took the role as Head of Marketing of the 5th Asia-Pacific PWS Virtual Conference in 2021, jointly organized by four national PWS Associations of Malaysia, Australia, New Zealand and Thailand respectively. Lantz has operated a strategic marketing consultancy company since the mid 90’s that collaborates with international universities in the areas of media, event management, youth development and student services. As part of his social contribution, he continues to tap on opportunities to engage with the tertiary education sector to promote wider studies and research focusing on diversity and inclusion within the rare diseases space. His aspiration is to grow and scale-up a social enterprise business model that will embrace the employability of adults with PWS so that it can enrich and create purpose in their lives. For a start, he hopes to bridge the information gap in Asia by increasing PWS advocacy in this region. He believes in IPWSO’s long term vision and hopes that his contribution will add value to IPWSO’s strategic goals. Lantz has been an IPWSO Trustee since 2022.
Tünde Liplin
Treasurer
Tünde Liplin is a mother of 2 children. Her firstborn child, a son, Levente who lives with PWS was born in 2011, and she has a daughter, Panna, who was born in 2015. Her professional background is as a financial analyst. After she graduated, Tünde worked hard to attain her role as lead Financial Analyst for 17 years in a multinational company. But as a mother who cares for a child with special needs, she decided to give up her business career and concentrate full time on her family and building a strong PWS organization in Hungary. She was involved, with 10 other families, in the creation of the Hungarian PWS Association in 2019. She is currently the president of the Association. Her work consists of arranging official affairs, writing applications, organizing and managing volunteer work, and also organizing different types of parent meetings and keeping in touch with medical organizations. Her personal objective is to create an information database in the Hungarian language, and her long term goal to establish the first Hungarian PWS residential home for adults. Tünde has been an IPWSO Trustee since 2022.
Scott Arant
Scott lives in Dunwoody with his wife Deborah. They have three children Charlie, Jack and Ally (w/ PWS). Scott founded American Health Imaging (AHI) in 1998 and served as its CEO for 24 years before semi-retiring in 2022. In that time AHI became the largest provider of high-tech radiological imaging in the southeast while employing nearly 500 people. Scott serves as a Director on several healthcare-oriented boards: US Radiology Specialists, Foundation for Prader Willi Research, PWS Association-Georgia, Physicians Care Clinic, NeuroScience Foundation, Association for Quality Imaging and The Texas IDTF Association. He graduated from Auburn University’s business school in 1991. In his off time Scott enjoys spending time with his family at the lake, hunting, fishing, golfing and working on a new PWS Foundation known as C-15 Foundation dedicated to a Work, Live, Play and Research campus.
Patrice Carroll
Patrice Carroll is the director of PWS services for both children and adults at Latham Centers in Massachusetts, USA. Patrice received her MSW from Simmons College, Boston, MA 2008. Patrice is the co-chair of the PWSA USA professional providers advisory board and has been working with children and adults diagnosed with PWS since 2002. Patrice is a co-author of the book Living Healthy with Prader-Willi Syndrome. In addition to her experience with developing person-centered vocational programming for people with PWS, she has specialized in the management of skin and rectal picking using intensive, non-contingent, sensory stimulation.
Dagmar Kiderlen
Dagmar was born in Germany but has lived for many years in France. She is a teacher and has a 20-year-old son who has PWS. Since 2018 Dagmar has represented and supported families and organised family meetings and information sessions in her region in Southern France. Dagmar speaks English, German, French and Russian. Dagmar has been an IPWSO Trustee since 2025.
Jackie Lodge
Jackie lives in the UK and since April 2023 has been CEO of the UK PWS Association. She has 30 years’ experience working in management roles in the charity sector and has also held various Trustee positions in local and international charities. Jackie has a BA in Psychology and a Master’s degree in Charity Management. Jackie has been an IPWSO Trustee since 2025.
Liane Motta
Liane lives in Brazil with her daughter with PWS who was born in 2014. With a background in journalism, translation, and book editing, Liane has used her skills to connect and empower families across Brazil. Under her leadership, the Brazilian PWS Association expanded to support over 500 families. Liane offers heartfelt, first-hand insight into the everyday realities and long-term outlook for families raising children with PWS. She speaks both Portuguese and English, bringing an international, parent-focused voice to this important conversation. Liane has been an IPWSO Trustee since 2025.
Johana Quinn
Originally from Colombia, I now reside in South Florida with my husband and our two children. My personal background is System Engineer – Computer Science. As a mother of a 13-year-old daughter with Prader-Willi syndrome (PWS), I have cultivated compassion, resilience, empowerment, and the courage to navigate the unique challenges PWS brings. From the moment my daughter was born, I developed a deep passion for helping other families affected by PWS, sharing my experiences to offer support and guidance. I have proudly served on the board of the PWS Colombian Association, working alongside them to organize and deliver International PWS symposiums. My journey has been one of unwavering dedication to my daughter and the PWS community, striving to make a difference in the lives of others. Johana has been a co-opted IPWSO Trustee since 2025.
Brett Thompson
Brett is the CEO of Interaction Disability Services, located in Bella Vista, NSW. He has held this role for over 4 years, having previously worked for over 32 years in the public health system in NSW and SA. Brett has been a member of the NSW National Disability Services State Committee for the last 3 years and has been one of two vice chairs for the last year. Brett was successful re-elected to the State Committee continuing his commitment to challenging the status quo to achieve the best outcomes for participants, families and service providers.
Brett’s goal to create a bigger impact for more people continues to inspire his interest in joining committees of influence. One of Brett’s learnings from his many years working in the public health system is that sharing personal experiences of best practice and innovation is the only way to deliver sustainable best practice for the end users, participants, clients, customers or patients. The global work of the International Prader-Willi Syndrome Organisation in supporting people with PWS, their families and professionals and their commitment to progressing best practice is an area Brett is keen to assist in developing further.
Brett holds a Bachelor of Applied Science (Nutrition), a Post Graduate Diploma in Dietetics and a Master of Business Administration.
Brett has a solid understanding and wealth of experience in all aspects of governance and dealings with bureaucracy and politics, though his passion is working with people.
Brett has been a co-opted IPWSO Trustee since 2025.
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International Community
IPWSO was established so that PWS associations, families, clinicians and caregivers around the world could exchange information and support and have a united global voice under one umbrella.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
Paediatric Association of Nigeria - 57th Annual Scientific Conference
IPWSO was proud to support a dedicated PWS symposium at the 57th Annual Scientific Conference of the Paediatric Association of Nigeria (PAN) Conference held 21-23 January 2026 in Ogun State.
Famcare Board Member, Dr Elizabeth Oyenusi, presented on the clinical features, diagnosis, and management of PWS, while Dr Oluwakemi Ashubu shared the first genetically confirmed case of PWS in the country - an important milestone. The session attracted over 104 delegates and sparked a lively discussion.
IPWSO also hosted an exhbition table throughout the 3-day conference, distributing educational materials and engaging directly with healthcare professionals.
We are hugely grateful to Dr Oyenusi, Dr Ashubu and Dr Oladipo (Senior Registrar) for their support in making this educational oureach possible - helping to strengthen awareness and improve early diagnosis of PWS in Nigeria. Funding for this event was kindly provided by Friends of IPWSO (USA).
Global Newborn Society Inaugural Conference, Sweden
The Global Newborn Society’s 1st Conference took place in Uppsala and Stockholm, Sweden, from 2-4 November 2025, marking an exciting milestone for the organisation’s international community.
We were delighted that Dr Susanne Blichfeldt was invited to deliver a plenary lecture on behalf of IPWSO, titled “Neonatal Hypotonia: Clinical Features Seen in PWS That Can Help Differentiate It from Other Congenital Disorders with Similar Symptoms.”
The inaugural event brought together a diverse audience of physicians, nurses, and social care leaders from around the world. The programme was wide-ranging and stimulating, featuring cutting-edge discussions on newborn health, early diagnosis, and innovative care practices - setting a strong foundation for future collaboration within this growing global network.
ASPED 2025, Dubai, UAE
The 6th conference of the Arab Society for Paediatric Endocrinology and Diabetes was held in Dubai over two days on the 26th and 27th September 2025. IPWSO was invited to be a partner and to present at a session on PWS. The conference was attended by over 400 paediatric endocrinologists from more than 20 countries in the Middle East and North Africa. Charlotte Hoybye and Tony Holland attended and presented on behalf of IPWSO and Dr Sarah Ehtisham described her experience seeing patients with PWS in the United Arab Emirates. IPWSO hosted a stand for the whole conference.
In conversation many attendees reported seeing people with PWS and described the challenges they faced, particularly with the management of behaviour problems. Some felt nervous about starting growth hormone as they had had no experience prescribing it to infants with PWS.
Approximately 100 attendees joined the IPWSO mailing list and attendees were very keen to gain knowledge about PWS. Numerous memory sticks with information on PWS and printed material in English and Arabic were taken. Some attendees talked about establishing national or regional PWS Associations.
This was an extremely positive experience and hopefully attending this meeting has laid the groundwork for IPWSO to engage more fully in the Region in the future. We were very well looked after, and the organisers were excellent hosts.
EPNS 2025, Munich, Germany
Together with parents and representatives from the Prader-Willi-Syndrom Vereinigung Deutschland, we were proud to host a PWS exhibition stand at the 16th Congress of the European Paediatric Neurology Society, held in Munich from 8-14 July 2025. The event welcomed over 2,000 medical professionals from around the world.
We had the pleasure of engaging with attendees from Türkiye, Iraq, Palestine, Croatia, Moldova, the Philippines, Ukraine, North Macedonia, Kazakhstan, Armenia, and many local specialists.
Dr. Stefani Didt, Gesellschafter at Katholische Jugendfürsorge der Diözese Augsburg, kindly supported us at the stand and provided expert responses to clinical enquiries. We hope these international connections will contribute to raising awareness about IPWSO’s work, particularly in improving access to genetic testing in underserved regions.
We also highlighted the new treatment for hyperphagia and shared our recent publication, "Improving Mental Health and Well-being for People with PWS."
Sincere thanks to our colleagues from PWS Vereinigung Deutschland and to Dr. Didt for their invaluable support.
ESPE-ESE 2025, Copenhagen, Denmark
IPWSO was honoured to participate in the recent Joint Congress of the European Society for Paediatric Endocrinology (ESPE) and the European Society of Endocrinology (ESE), held in Copenhagen from 10–13 May 2025. This important event provided an invaluable opportunity to raise awareness of Prader-Willi syndrome (PWS) among a broad international medical audience.
IPWSO was represented by our CEO, Margaret Walker, along with Dr Charlotte Höybye from Sweden and Dr. Susanne Blichfeldt from Denmark—both esteemed members of IPWSO’s Clinical and Scientific Advisory Board.
Dr Blichfeldt noted that this congress is a major event in the clinical academic calendar and has a particular significance as it marks the first-ever joint meeting of these two prominent societies. Despite its European designation, the congress attracted participants from around the globe, including delegates from the Middle East, Africa, the United States, Japan, Australia, and New Zealand.
IPWSO’s educational booth was strategically positioned within the Patient Advisory Group area dedicated to rare disease organisations. As part of the programme, we were invited to deliver a 30-minute presentation during the Patient Voices Session. Dr Charlotte Höybye and Dr Susanne Blichfeldt presented on Prader-Willi syndrome (PWS), with a focus on genetics, endocrinology, and clinical manifestations. Our presentation, along with many others, was recorded and is now available on demand via the ESPE-ESE congress platform.
PWS was prominently featured throughout the congress. In a session on the transition of care for patients with rare diseases, Dr. Maithé Tauber (Toulouse, France) discussed the specific challenges associated with the transition period in PWS. She emphasized the need for multidisciplinary care and ongoing specialist follow-up in adulthood through dedicated PWS clinics.
Another session addressed medical and clinical management in both children and adults with PWS, again highlighting the critical importance of a smooth transition from paediatric to adult care and the role of specialised clinics. The session included an in-depth discussion on hyperphagia in PWS, exploring its profound impact on individuals and their families. Management strategies were reviewed, and a new medication, Vykat, was presented as a potential treatment for hyperphagia.
In addition, there was a strong presence of scientific posters on PWS from various countries, covering a wide range of topics such as hormonal therapies, genetic findings, ageing, and guidance for families. A total of 33 posters focused on PWS, reflecting a growing global interest and commitment to advancing knowledge and care in this area.
We were greatly encouraged by the high level of engagement and the visibility given to PWS throughout the congress. This increased awareness brings hope that more children will be diagnosed earlier and receive appropriate, specialised medical care from childhood through to adulthood.
ASPAE 2025, Abidjan, Côte d’Ivoire
After Yaounde (Cameroon 2023) and Alger (Algeria 2024), IPWSO was pleased to be present at the 16th Annual Congress of the African Society of Paediatric and Adolescent Endocrinology (ASPAE), at the invitation of Dr Kouamé Hervé Miconda, Programme Co-organiser. Prior to the main conference, IPWSO, in partnership with Dr Micondo, organised a dedicated PWS workshop which attracted 60 professionals - paediatricians, endocrinologists, doctors, students, nurses, and midwives.
MENA 2025 Abu Dhabi, UAE
The Middle East and North African (MENA) conference for Rare Diseases was held in Abu Dhabi, United Arab Emirates, between 17th and 20th April 2025. Tony Holland represented IPWSO at this meeting and presented a poster about our work. The conference was attended by clinicians, genetic councillors, scientists, and other health disciplines from across North Africa and the Middle East. The conference was in English as many clinicians in this part of the world are from elsewhere and not Arabic speakers. The conference was of a very high standard and ranged broadly across many rare genetically determined conditions as well as there also being discussions about how to develop services and how to seek approval for new treatments. Our poster was one of five that was selected as the best posters exhibited at the meeting. Tony said, "My experience of the conference was very positive and I am sure there are opportunities that can be built on. Being part of the endocrinology meeting, which is likely to be attended by endocrinologists from across the whole region, provides a wonderful opportunity to engage more fully with clinicians most likely to see people with PWS".
Kenya Paediatric Association Annual Scientific Conference, Monbassa, Kenya
Dr Menbere Kahssay and Dr Renson Mukhwana, Aga Khan University Hospital, Nairobi represented the Kenyan team and, together with Drs Constanze Laemmer and Dr Charlotte Höybye, managed the IPWSO educational booth at our first meeting in this region.
A dedicated session on PWS significantly raised awareness and knowledge about the syndrome among paediatricians and allied health professionals.
Dr Kahssay said, "We were able to have track and plenary session and four days interaction with the participants at the booth.
The PWS session focused on case experiences and regional differences in PWS management. Thanks to IPWSO’s support, Drs Charlotte Hoybye and Constanze Lammer joined as expert speakers, sharing their valuable experiences in managing PWS across the neonatal, childhood, and adult stages".
Dr Menbere Kahssay and Dr Renson Mukhwana presented genetically confirmed local cases, highlighting diagnostic challenges and treatment approaches.
Third Biennial Rare Diseases Conference, Rare X, Johannesburg, South Africa
Karin Clarke and Molelekeng Sethuntsa organised the IPWSO exhibition table at this event in Johannesburg from 14-17 February 2024. Molelekeng attended the conference and reported on the excellent discussions that focused on the challenges of early diagnosis, especially in Africa, centres of excellence, and ways that the Department of Health, WHO and RDI can improve detection and treatment of rare diseases.
6th RARE Summit 2023, Cambridge, UK
Tony Holland, President, and Agnes Hoctor, Communications and Membership Manager, represented IPWSO at the 6th RARE Summit organised by Cambridge Rare Disease Network on 12 October, 2023.
MetaECHO® 2023, Global Conference, Albuquerque, New Mexico
The 5th MetaECHO® Global Conference took place from September 18-21 in Albuquerque, New Mexico. It celebrated 20 years of ECHO programmes and brought together ECHO leaders, partner teams, government officials, funders, policy makers, and industry experts to share retrospective work and thoughts on the future of ECHO. Our President, Tony Holland, presented a paper on “A Global ECHO Programme for the Rare Disorder – PWS", based on IPWSO’s Project ECHO programme.
EPNS 2023, Prague, Czech Republic
The 15th European Paediatric Neurology Society Congress (EPNS) took place from 20-24 June. Tünde Liplin, PWS Hungary, and Hana Verichová, PWS Czechia, represented IPWSO. Twenty-two people from countries including Georgia, Israel, Lithuania, Turkey, Italy, Slovakia, Romania, Netherlands, Bosnia Herzegovina, Belgium, Argentina, Norway, Serbia, India, and Australia subscribed to the "Stay in touch with IPWSO!" contact list. Tünde reported that many people came to the stand just to inquire and chat, the majority of whom were hearing about IPWSO and our work for the first time.
ECE 2023, Istanbul, Turkey
The European Congress of Endocrinology (ECE) took place from 13-16 May. We hosted an information table and were represented by IPWSO advisers, Constanze Lämmer and Charlotte Höybye, and also our Communications and Membership Manager, Agnes Hoctor. We were pleased to be given the opportunity to present on IPWSO and PWS at the Hub Session. The most exciting and important element for us was that the Turkish location meant that delegates came from many countries in Middle East as well as Europe.
ASPAE 2023, Yaoundé, Cameroon
We hosted an educational booth and presented at the round table on Obesity at this important Endocrinology conference hosted by the African Society of Paediatric and Adolescent Endocrinology (ASPAE) from 9-10 February. Read our blog about our visit.
ECE 2021, Online
We hosted an educational booth and gave a presentation at the European Congress of Endocrinology in May 2021.
ESPE 2019, Vienna, Austria
We exhibited at the European Society of Paediatric Endocrinology (ESPE) Conference in Vienna, Austria, which took place in September 2019. Find out more in our blog.
ECE 2019, Lyon, France
We exhibited at the European Congress of Endocrinology in May 2019.
Dr Ashubu discussing IPWSO's educational materials with delegates at our booth.
IPWSO was honoured to be invited to present at the Global Newborn Society's Inaugural Conference.
Dr Sarah Ehtisham presenting at ASPED 2025 followed by a panel discussion.
Colleagues from PWS Vereinigung Deutschland help manage our PWS stand at EPNS 2025. Many thanks to all the parents and carers for their invaluable support!
Dr Charlotte Höybye (Sweden) and Dr. Susanne Blichfeldt (Denmark) presenting at the ESPE-ESE Patient Voices Session - May 2025
Dr Blichfeldt and Margaret Walker (CEO) managing our IPWSO educational booth.
François Besnier, IPWSO's Vice President, meeting some of our travel fellowship delegates at ASPAE 2025.
IPWSO's poster achieves top award!
Many thanks to Drs Constanze Laemmer, Menbere Kahssay, Charlotte Höybye and Renson Mukwana for all their support at KPA 2025.