IPWSO Mental Health ECHO® Videos
Materials from IPWSO Mental Health ECHO® are available here.
Patrice Carroll, Director of PWS Services, Latham Centers, USA
“IPWSO Mental Health ECHO Summary September 26, 2023”
Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on September 26, 2023.
Find a full overview of the meeting here.
Kate Woodcock, University of Birmingham, UK
“Can early intervention with children living with PWS strengthen the cognitive capacity to effectively deal with change?”
Presented at the IPWSO Mental Health ECHO on September 26, 2023.
The presentation included:
1. Cognitive flexibility and specifically task switching in Prader-Willi syndrome. Some of the situations that can be most difficult for people with Prader-Willi syndrome are when task switching is challenged. In these situations, emotional outbursts and problematic behaviours are common.
2. An approach that carefully balances structure in routines with flexibility for children may be a helpful early intervention strategy.
3. Development of a web-based tool to help strike this balance. A key element is that the tool uses gamification to allow children to feel in control of their routines, despite parents being able to programme flexibility into these.
Find a full overview of the meeting here.
Anastasia Dimitropoulos, Case Western Reserve University, USA
“The Importance of Pretend Play in Early Intervention.”
Presented at the IPWSO Mental Health ECHO on September 26, 2023.
This presentation covered:
- The importance of pretend play for early intervention.
- Social cognitive challenges in PWS that can be addressed with play intervention.
- Strategies to boost pretend play and use play as a platform for learning for children with PWS.
Find a full overview of the meeting here.
Elizabeth Roof, Vanderbilt University, USA
“IPWSO Mental Health ECHO Summary July 25, 2023”
Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on July 25, 2023.
Find a full overview of the meeting here.
Kasey Bedard, BCBA, University of Florida, USA
“Applied Behavior Analysis and Prader-Willi syndrome”
Presented at the IPWSO Mental Health ECHO on July 25, 2023.
The presentation included:
- Brief introduction to Applied Behaviour Analysis as a science
- A conceptual overview of how behaviour and the environment interact to change and maintain behaviours
- An overview of behaviours of concern in PWS from a behaviour analytic perspective
Find a full overview of the meeting here. The PDF of this presentation is available here.
Kasey has also shared two helpful handouts which were discussed during the Question and Answer session.
1. Emotional regulation
2. Steps for teaching a self-calming break
Norbert Hödebeck-Stuntebeck, PhD, PWS-InterNational, Germany
“The application of psychological models in the understanding of adaptive and maladaptive behaviours in people with Prader-Willi syndrome”
Presented at the IPWSO Mental Health ECHO on July 25, 2023.
The presentation included:
- The complexity of human behavior
- Systemic view
- Developmental age
- Behaviour analysis
- 5 elements of subjective percieved wellbeing
Find a full overview of the meeting here. The PDF of this presentation is available here.
Patrice Carroll, Director of PWS Services, Latham Centers, USA
“IPWSO Mental Health ECHO Summary June 27, 2023”
Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on June 27, 2023.
Find a full overview of the meeting here.
Tony Holland, President, IPWSO, University of Cambridge, UK
“Clinical Challenge: When Services Fail: The prevention of avoidable deaths”
Presented at the IPWSO Mental Health ECHO on June 27, 2023.
Tony Holland shared a Clinical Challenge to stimulate discussion on what happens when PWS mental health services fail.
Find a full overview of the meeting here. The PDF of this presentation is available here.
Maximillian Deest, Psychiatrist, Outpatient Department for Mental Health in Rare Genetic Disorders, Hannover Medical School, Germany
“Mental Health services for adults with PWS”
Presented at the IPWSO Mental Health ECHO on June 27, 2023.
The presentation included:
1. Learnings from the Outpatient Department for Mental Health in Rare Genetic Disorders at Hannover Medical School, Germany.
2. The most important things you need to be aware of when treating people with PWS and mental health issues.
3. The ideal setup of services for mental health in PWS.
Find a full overview of the meeting here. The PDF of this presentation is available here.
Louise Gallagher, Chief of the Child and Youth Mental Health Collaborative at the Hospital for SickKids in Toronto, Canada
“Co-designing mental health and social services for PWS in Ireland”
Presented at the IPWSO Mental Health ECHO on June 27, 2023.
The learning objectives for this presentation were:
1. Understand how to conduct a gaps analysis of service provision with stakeholders.
2. Understanding the behavioural, emotional and psychiatric needs of children and youth with PWS.
3. Learn about the development of an integrated approach to care delivery involving psychiatry.
Find a full overview of the meeting here. The PDF of this presentation is available here.
Tony Holland, President, IPWSO, University of Cambridge, UK
“IPWSO Mental Health ECHO Summary May 30, 2023”
Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on May 30, 2023.
Find a full overview of the meeting here.
Christian Eberlein, Adult Psychiatrist and Head of the special outpatient clinic for mental health in rare syndromes, Hannover Medical School, Hannover, Germany
“Case Presentation: Psychosis in Prader-Willi syndrome”
Presented at the IPWSO Mental Health ECHO on May 30, 2023.
The discussion explored:
- How does psychosis in PWS differ from e.g. schizophrenic psychosis?
- Are these really always psychoses, or rather do we see the expression of an overload reaction?
- What is the benefit of antipsychotic medications in PWS associated psychoses?
Find a full overview of the meeting here.
Janice Forster, MD, Board Certified General and Child and Adolescent Psychiatrist in private practice in Pittsburgh PA, USA
“Behavioural phenotype, psychiatric diagnosis, and a model for intervention”
Presented at the IPWSO Mental Health ECHO on May 30, 2023.
The learning objectives for this presentation were:
1. To describe the developmental onset and longitudinal course of phenotypic behaviours;
2. To identify psychiatric symptoms as distinct from phenotypic behaviour and response to stress;
3. To discuss an algorithm for intervention highlighting
– eco-environmental modification,
– strategies for improving coping skills,
– use of behaviour therapy, and
– management with psychotropic medication.
Find a full overview of the meeting here. The PDF of this presentation is available here.
Patrice Carroll, Director of PWS Services, Latham Centers, USA
“IPWSO Mental Health ECHO Summary April 25, 2023”
Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on April 25, 2023.
Find a full overview of the meeting here.
Elizabeth Roof, MA, Research Associate, Department of Psychology at Vanderbilt University, Tennessee, USA
“Clinical Challenge: Compulsions in Prader-Willi Syndrome”
Presented at the IPWSO Mental Health ECHO on April 25, 2023.
The discussion explored:
• Best way to evaluate compulsions in PWS?
• What are the challenges to making a diagnosis of OCD in PWS?
• Best practices – interview vs. observation vs. questionnaire.
• Are we measuring symptoms or making a diagnosis in PWS?
Find a full overview of the meeting here. The PDF of this presentation is available here.
Deepan Singh, MD, Child, Adolescent, & Adult Psychiatrist, Vice-Chair of Ambulatory Psychiatry, Maimonides Medical Center, New York, USA
“Neurobiology of Prader-Willi Syndrome: Arriving at a Phenomenological Explanatory Model with Mechanistic Insights”
Presented at the IPWSO Mental Health ECHO on April 25, 2023.
The learning objectives for this presentation were:
- Understanding the genetic and neurobiological causes of behavioural abnormalities in Prader-Willi syndrome;
- Appreciating the central role of the hypothalamus and its connected brain structures in the behavioural, and cognitive manifestations of Prader-Willi syndrome;
- Discussing the challenges and limitations of current treatments for Prader-Willi syndrome, and exploring potential new approaches;
- Discuss a novel phenomenological explanatory model for abnormal response monitoring in PWS, based on the interplay between genetic, neural, and environmental factors.
Find a full overview of the meeting here. The PDF of this presentation is available here.
Tony Holland, President, IPWSO, University of Cambridge, UK
“IPWSO Mental Health ECHO Summary March 28, 2023”
Brief audio summary of the presentations and discussion at the IPWSO Mental Health ECHO on March 28, 2023.
Find a full overview of the meeting here.
Marco O. Bertelli, MD, Scientific Director of the Research and Clinical Centre (CREA) of Fondazione San Sebastiano, Misericordia di Firenze, Florence, Italy
“Relating Quality of Life measurement to the lived experience of persons with PWS and their families”
Presented at the IPWSO Mental Health ECHO on March 28, 2023.
The presentation included:
• Quality of life outcome measures using the scores derived from quality of life indicators to assess ongoing and lasting changes to the “goodness” of people’s lives;
• There is no absolute method to measure quality of life and different approaches to measuring quality of life as an outcome may be taken according to the purpose of applying the measure;
• Different approaches to QoL conceptualization and measurement can be grouped into two: those based on shared aspects and those based on personal aspects;
• Whatever measure is used, it is best to interpret the results through the lens of the lived experience of individuals and families.
Find a full overview of the meeting here. The PDF of this presentation is available here.
Brian Hughes, Professor of Psychology, University of Galway, Ireland
“Well-being and Prader-Willi Syndrome”
Presented at the IPWSO Mental Health ECHO on March 28, 2023.
This presentation addressed:
• The various concepts intertwined with the idea of ‘well-being’;
• The different domains within which a person’s well-being can be considered;
• The specific challenges presented by PWS with respect to these domains of well-being;
• Well-being as more than ‘the absence of mental ill-health’
Find a full overview of the meeting here. The PDF of this presentation is available here.
Tony Holland, President, IPWSO, University of Cambridge, UK
“Introduction to the IPWSO Mental Health ECHO® Programme”
IPWSO President Tony Holland presents on the IPWSO Mental Health Network and the ECHO methodology as part of the first IPWSO Mental Health ECHO on March 28, 2023.
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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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.