Conference Programme
6th International Prader-Willi Syndrome Caregivers’ Conference
PDFs of all presentations are linked where permission is given by the speaker. Note that for workshop presentations the PDF is linked under the speaker’s name.
Summaries of the Workshops are also available and are linked from this page.
Day 1 | Tuesday 21 May
09:00 – 09:30 Opening and welcome Dr Andreas Eckhoff, CEO of EJF gemeinnützige AG, Germany, Lynn Garrick, Chair of the IPWSO Professional Providers and Caregivers Board (PPCB), USA, Hubert Soyer, PPCB Member, Germany and Tony Holland, IPWSO President, University of Cambridge UK
09:30 – 09:45 Thank you caregivers! Video of thanks from people receiving PWS care around the world.
09:45 – 10:15 Pam Eisen Lecture: The future of care for people with PWS Norbert Hödebeck-Stuntebeck, PhD, PWS-InterNational, Germany
10:15 – 10:45 Break
10:45 – 11:15 IPWSO’s initiative to give people with PWS a voice Svetlana Labun, Managing Director, EJF Hollerhaus gGmbH, Trustee, IPWSO, Germany
Give people with PWS a voice: Requirements and solutions (example of a group in Germany) Christian Blohm, Metalworker, Germany
11:15 – 11:30 Outcomes for persons with Prader-Willi syndrome in full-time services: Findings from international archival data and future research directions Brian Hughes, Professor of Psychology, University of Galway, Ireland
11:30 – 11:45 Operationalised list of infrastructure and staff skills required for specialised care of PWS as rated by residential care providers in the USA Janice Forster, MD, Board Certified General and Child and Adolescent Psychiatrist in private practice in Pittsburgh PA, USA
11:45 – 12:00 Service involvement for children seen in the specialist PWS child mental health service in UK: Supporting a multi-agency approach to food security and wellbeing (and how restrictions can be liberating) Dr Sarah Carman, National and Specialist CAMHS Specialist Prader Willi Syndrome Service, Mental Health of Intellectual Disabilities Team, SCAAND, Michael Rutter Centre, South London and Maudsley NHS Foundation Trust, UK
12:00 – 12:15 Introduction to the poster presentations and afternoon workshops Laura Keane, Co- Chair of the IPWSO Professional Providers and Caregivers Board, Chief Executive, Resilience Healthcare, Ireland
12:15 – 13:15 Lunch Break
13:15 – 13:45 Poster presentations
Moderated by: Laura Keane, Chief Executive, Resilience Healthcare, Ireland
13:45 – 15: 30 1st workshops begin. Choose between:
1. Therapy options: Art and ABA Leaders: Tovi Florsheim, Israel and Vikacha Phiri, USA
2. Balancing rights and restrictions for individuals with PWS Leaders: Hubert Soyer, Germany, Gary Brennan, Ireland, Johannes Fuhrmann, Germany and Lynn Garrick, USA
3. Friends, partnerships and sexuality Leaders: Patrice Carroll, USA and Neil Gumley, Australia
4. Understanding behaviour Leaders: Norbert Hödebeck-Stuntebeck (Wellbeing Presentation | Behaviour Analysis Presentation | WAIS-IV Presentation), Germany and Tony Holland, UK (Click here for Observation Sheet.)
Summaries of the Workshops are also available.
15:30 – 16:00 Break
16:00 – 17:45 1st workshops continue
17:45 End of day
Day 2 | Wednesday 22 May
09:00 – 10:30 First workshops continue. Concluding session.
10:30 – 11:00 Break
11:00 – 11:30 Overview of the Clinical Trials process Nathalie Kayadjanian, Ph.D. Scientific advisor, Raymond A. Wood Foundation, USA
11:30 – 12:30 Research and Clinical Trials Updates June Sanson, Executive Director of Patient Advocacy & industry Relations, Acadia Pharmaceuticals, USA | Santiago Figueroa Pérez, COO Palobiofarma, Spain | Dr. Dairine Dempsey, VP, Europe, Soleno Therapeutics Inc., Ireland
Moderated by: Tony Holland, IPWSO President, University of Cambridge UK
12:30 – 13:30 Lunch Break
13:30 – 15:15 Second workshops begin. Choose between:
1. Ageing Leaders: Susanne Blichfeldt and Larry Genstil
2. Staff retention: and what happens when there’s a breakdown? Leaders: Lynn Garrick and Claire Poor-Harmon, USA (Click here for worksheet.)
3. Friends, partnerships and sexuality (repeated) Leaders: Patrice Carroll, USA and Neil Gumley, Australia
4. Understanding behaviour (repeated) Leaders: Norbert Hödebeck-Stuntebeck (Wellbeing Presentation | Behaviour Analysis Presentation | WAIS-IV Presentation), Germany and Tony Holland, UK (Click here for Observation Sheet.)
Summaries of the Workshops are also available.
15:15 – 15:45 Break
15:45 – 17:00 Second workshops continue
17:30 – 19:00 Break
19:00 – 23:00 Conference Dinner
Day 3 | Thursday 23 May
09:00 – 10:30 Second workshops continue. Concluding session.
10:30 – 11:00 Break
11:00 – 11:30 Meaningful Employment for people with PWS Larry Genstil, Psychologist, Genstil Institute of Human Behaviour, Israel
11:30 – 11:45 Network Switzerland Bastian Bühler, Social educator/Team leader, Stiftung Arkadis, Switzerland
11:45 – 12:00 PWS Competence Center Austria Janine Sinner, Team Leader, Caritas Oberösterreich, Austria
12:00 – 13:30 Lunch Break
13:30 – 14:15 Panel discussion: Self-determination, self-control: Opportunities and limitations Lee Chamberlain, VP & Chief Strategy Officer, Latham Centers, Inc., USA | Maria Kirby, Clinical Services Manager, Resilience Healthcare, Ireland | Fred Nikolai, Chairman Prader-Willi Stichting, The Netherlands | Michelle Torbert, President, Friends of IPWSO (USA), USA
Moderated by: Hubert Soyer, Psychologist, Germany
14:15 – 15:00 Questions and Answers: Your medical questions David M. Agarwal, MD, FSIR, Indiana University School of Medicine, USA | Susanne Blichfeldt, MD, The Danish Prader-Willi Association, IPWSO Clinical and Scientific Advisory Board (CSAB), Denmark | Janice Forster, MD, Developmental Neuropsychiatrist, Pittsburg Partnership, Pittsburgh, PA, USA
Moderated by: Lynn Garrick, Programme Director, AME Community Services, USA
15:00 – 15:45 Panel discussion: What supports are available for people with PWS who overburden the system with their challenging behaviour? Patrice Carroll, Director of PWS Services, Latham Centers, USA | Lynn Garrick, Programme Director, AME Community Services, USA | Larry Genstil, Psychologist, Genstil Institute of Human Behaviour, Israel | Myles Kelly, Project Manager, PWSA UK, UK | Maria Kirby, Clinical Services Manager, Resilience Healthcare, Ireland
Moderated by: Norbert Hödebeck-Stuntebeck, PhD, PWS-InterNational, Germany
15:45 – 16:15 Close and thank you
Lynn Garrick, Chair of the IPWSO Professional Providers and Caregivers Board, and Laura Keane, Co- Chair
16:15 End of conference
Conference videos
For more content from the conference, be sure to view the playlist of videos from the conference on IPWSO’s YouTube channel.
Scholarships
Depending on availability of funds, IPWSO offers scholarships to attend our conferences. Contact us to keep up to date with conferences, workshops, meetings, and scholarship grants.
Future conferences
Has your Association thought about hosting an IPWSO conference? In the past these have been held in the Netherlands, Norway, Italy, USA, New Zealand, Romania, Taiwan, UK, Canada, Cuba and most recently Ireland. In 2025 we are delighted to be returning to the USA.
If your association is interested in hosting a future conference do get in touch.
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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.
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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.