IPWSO Health ECHO® Videos
Materials from IPWSO Health ECHO® are available here.
Prof. Dr. Ralf Stücker Medical Director and Chief of Pediatric Orthopedic Department, Altonaer Kinderkrankenhaus, Hamburg, Germany
“Management of orthopaedics in Prader-Willi-syndrome”
Presented at the IPWSO Health ECHO on December 7, 2021. This presentation focuses on spinal deformities and helped us to understand natural history of scoliosis in Prader-Willi-Syndrome, the possibilities in growth guiding surgery in young children with PWS, and complications which may arise in the management of scoliosis.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Norbert Hödebeck-Stuntebeck, Psychologist, Diakonische Stifung Wittekindshof, Germany
“Socialisation and Communication in PWS”
Presented at the IPWSO Health ECHO on November 9, 2021. In this session we considered the communication of the person with Prader-Willi syndrome, both verbal and nonverbal, within a complex communication environment and how people may arrive at different understandings within that environment. The 4 ears model can help us to address complexity of meaning between the factual, the interpersonal, the self-revelation, and the appeal forms of communication for people with PWS.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Maria Guilia Marini, Healthcare Area, Fondazione ISTUD, Italy
“Caring and Living with Prader-Willi syndrome in Italy”
Presented at the IPWSO Health ECHO on October 12, 2021, Caring and Living with Prader-Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentred narrative medicine research. In this session we considered different ideas around a narrative medicine approach as being either tools of understanding or tools of education, and reflected on the perspectives of the people with Prader-Will syndrome, both children and adults, and the perspectives of family, caregivers and health professionals.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Georgina Loughnan, Prader-Willi Syndrome Clinic, Royal Prince Alfred Hospital, Sydney, Australia
“PART 2 of Diet and Exercise and the Prevention of Obesity: The Power of Exercise for People with PWS”
Presented at the IPWSO Health ECHO on September 14, 2021. In this session we learned that exercise is essential for all people with PWS – not just for weight management, and that while growth hormone is a great treatment for people with PWS, it does not negate the need for a healthy lifestyle.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Dr Constanze Lämmer, Senior Physician, Children’s Hospital, St. Bernward Hospital, Hildesheim, Germany
“PART 1 of Diet and Exercise and the Prevention of Obesity: Nutrition in PWS”
Presented at the IPWSO Health ECHO on September 14, 2021. In this session we learned that a healthy meal plan is essential for more than just a healthy weight, and that while growth hormone is a great treatment for people with PWS, it does not negate the need for a healthy lifestyle.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Brendon Yee, Associate Professor, Respiratory and Sleep Physician, Royal Prince Alfred Hospital, Sydney, Australia
“Sleep and respiratory manifestations of PWS: an adult perspective”
Presented at the IPWSO Health ECHO on July 13, 2021. In this session we learned how to recognise the common manifestations of sleep and respiratory disorders that may occur in Prader-Willi syndrome and management options for these disorders.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Prof Tony Holland, Emeritus Professor Department of Psychiatry, University of Cambridge and Consultant Psychiatrist, UK, and President of IPWSO “Behaviour and Mental Health”
Presented at the IPWSO Health ECHO on June 15, 2021. In this session we gained an understanding of the nature and characteristics of the behavioural and mental health conditions that impact on the mental health of people with PWS; the possible causal mechanisms and biological/environmental interactions that result in an increased risk for mental ill-health and; approaches to prevention, management, and treatment.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
See also A Primer for Psychiatrists, written by Janice L. Forster MD and Linda M. Gourash MD of the Pittsburgh Partnership and linked to on our website here with their permission.
Dr Tony Goldstone, Clinical Senior Lecturer and Consultant Endocrinologist, Imperial College London, UK
“How We Understand Hyperphagia in PWS”
Presented at the IPWSO Health ECHO on May 18, 2021. In this session we gained an understanding of the nature of hyperphagia and overeating in PWS, the importance of control of the food environment in management of hyperphagia in PWS, and the current situation regarding potential new treatments for hyperphagia in PWS. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Dr Charlotte Höybye, Senior physician, Associate professor, Karolinska University Hospital, Sweden
“Prader-Willi syndrome: Adolescent and Adult Endocrinology”
Presented at the IPWSO Health ECHO on April 20, 2021. In this session we learned how PWS is associated with documented hormone deficiencies which should be monitored and treated when indicated, and that hormone therapy offers an opportunity to reduce some of the adverse consequences of PWS. Please note some pictures have been removed for privacy. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Dr Constanze Lämmer, Senior Physician, Children’s Hospital, St. Bernward Hospital, Hildesheim, Germany
“The Care of the Infant with PWS”
Presented at the IPWSO Health ECHO on March 16, 2021. This talk covers the importance of a holistic approach; Nutrition; Physiotherapy; Early intervention; Endocrine aspects; Orthopedic problems; Additional health issues. The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Dr Kate Baker, Cambridge University Hospitals, University of Cambridge
“Prader-Willi syndrome: Genetic diagnosis”
PART 2 of Dr Kate Baker’s presentation, “Prader-Willi syndrome: Clinical presentations and genetic diagnosis” presented at the IPWSO Health ECHO on February 16, 2021. This part of the talk cover areas including different genetic forms of Prader-Willi syndrome; the genetic diagnostic pathway; the particular genetic sub types; the importance of genetics in a firm diagnosis. The PDF of this presentation is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Dr Kate Baker, Cambridge University Hospitals, University of Cambridge
“Prader-Willi syndrome: Clinical presentations”
PART 1 of Dr Kate Baker’s presentation, “Prader-Willi syndrome: Clinical presentations and genetic diagnosis” presented at the IPWSO Health ECHO on February 16, 2021. This part of the talk covers areas including clinical features of PWS; the evolution of PWS symptoms over time; evidence of endocrine deficiencies; the emergence of more psychiatric and psychological problems. The PDF of this presentation is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Tony Holland, President, IPWSO
“Introduction to Project ECHO®”
IPWSO President Tony Holland speaks about the objectives of Project ECHO as part of the first IPWSO Health ECHO on February 16, 2021.
Copyright and other intellectual property rights in the speakers’ papers and presentations remains the sole property of each speaker and IPWSO has the right to use and broadcast such papers and presentations under licence. Copyright in the recording of the ECHO® session remains the property of IPWSO. No participant or any other person has the right to reproduce the recording, or any paper or presentation, in whole or in part, without the written consent of IPWSO.
The information contained in the multimedia content (video content) posted, represents the views and opinions of the original creators, and whilst IPWSO requests presenters to use content that is evidence-based and peer reviewed, the video content does not necessarily represent the views of IPWSO. The mere appearance of video content on this site does not constitute an endorsement by IPWSO or its affiliates of such content. The content has been made available for informational and educational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. IPWSO hereby disclaims any and all liability to any party for any direct, indirect, implied, punitive, special, incidental, or other consequential damages arising directly or indirectly from any use of the video content, which is provided as is, and without warranties.
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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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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.