IPWSO Caregivers’ ECHO® Videos
Materials from IPWSO Caregivers’ ECHO® are available here.
Norbert Hödebeck-Stuntebeck, PhD, PWS-InterNational, Germany
“The role of Diagnostic in supporting people with Prader-Willi Syndrome”
Presented at the IPWSO Caregivers’ ECHO on May 18, 2022. This presentation covers the role of diagnostics in supporting people with PWS to improve care and improve quality of life. It includes looking at the course of a crisis, the level of arousal and the level of cognitive competence, and the importance of knowing as much as possible about the symptoms of the syndrome and to look at the environment, the bio psychosocial background and diagnostic of the person 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.
Brittni Kliment, Director of Program Marketing and Admissions, and Patrice Carroll, Director of PWS Services, Latham Centres, USA
“Education, Behavior Appreciation, and Positive Support Strategies”
Presented at the IPWSO Caregivers’ ECHO on April, 2022. This presentation lays out 3 reasons for some of the behavioral challenges that people with Prader-Willi syndrome can face; Executive Functioning Disorder, Sensory Processing Disorder, and Theory of Mind. The second part of the talk covers positive support strategies.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
During the group discussion a resource booklet called “Understanding the PWS Mindset and Development of Coping Skills” was discussed. Latham Centers have kindly shared this.
Susanne Blichfeldt M.D, Denmark
“Managing routine medical checks and other regular requirements in PWS”
Presented at the IPWSO Caregivers’ ECHO on March 23, 2022. Susanne’s presentation covers all of the important medical requirements for people with PWS and, given differences in the body in PWS, what you should be aware of in order to help keep the person safe and healthy. Reccomendations include advice on medical visits and what should be evaluated, visiting the dentist, vision checks, hearing tests and to support the individual in managing hygiene as needed.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Lynn Garrick, Programme Director and Claire Poor-Harmon, Recruiting and Hiring Manager for AME Community Services, Minnesota, USA
“How to Attract and Retain PWS Caregivers”
Presented at the IPWSO Caregivers’ ECHO on February 16, 2022. In a field where staff turnover is high and salaries are low, how can you support staff to succeed and want to stay in a demanding high-stress role? In this session we discussed attracting new employees, creating a tight community and supporting and respecting staff, just as we support and respect individuals with PWS. We recognised the importance of PWS specific training, and also creating a pathway to leadership, and a vision for the future where there is certification and accreditation for direct support professionals (DSPs) so that it becomes a career that people can aspire to and take pride in.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
Larry Genstil, Psychologist, Genstil Institute of Human Behaviour, Israel
“Meaningful Employment for People with PWS”
Presented at the IPWSO Caregivers’ ECHO on January 19, 2022. This presentation covers the types of employment opportunities (based on the Israeli model) and factors which determine the availability of employment for people with PWS, such as age, level of cognition, food security, motivation to work, and what training and support is available. The discussion following the presentation compared sheltered workshops and vocational opportunities across the world, as well as delving deeper into some of the challenges to be overcome when supporting the person with PWS in employment.
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
“The Power of Exercise for People with PWS”
Presented at the IPWSO Caregivers’ ECHO on December 15, 2021. In this session we learned that when we think of the balance of calories in, calories out, for PWS the scales should be tipped to the exercise. Because people with PWS start with a deficit of decreased muscle tone and strength, they have increased body fat, and they don’t burn as many calories as fast. So, because of that they’re always at risk of osteoporosis and muscle wasting, and getting the comorbidities that go along with obesity. So exercise, from the very beginning, in childhood, is very important to develop, in order to meet those milestones.
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
“Nutrition in PWS”
Presented at the IPWSO Caregivers’ ECHO on November 17, 2021. In this session we learned about the special metabolic situation of individuals with PWS, the keystones of a healthy balanced diet, the role of insulin, psychological aspects of nutritional management and more. As a group we discussed to what extent individuals with PWS can be in control of their diet, can learn to be more independent around food, and learn to manage not only the diet but their emotions and behaviours.
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
“Young and Clever: well educated people with PWS”
Presented at the IPWSO Caregivers’ ECHO on October 20, 2021. In this session we focused on the current generation of adolescents and young adults with PWS, who are very competent and know their rights, and problems that can arise within the care environment when they do not want to accept certain restrictions. We talked about some challenges for our traditional systems, and how to ensure sure families and people with PWS receive the right messages from an early age.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
For further reflections on this topic please read this blog post by François Besnier for Prader-Willi France.
Neil Gumley, Melbourne, Australia
“Transition for People with Prader-Willi Syndrome (PWS)”
Presented at the IPWSO Caregivers’ ECHO on September 22, 2021. In this session we focused on 3 areas of transition: Medical, Social and Environment. We shared examples of experience of transition, and strategies for managing transition to suit the individual 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.
Damien Jones, Interaction Disability Services, Australia
“Prader-Willi Syndrome (PWS) and Restrictive Practice”
Presented at the IPWSO Caregivers’ ECHO on July 21, 2021. In this session we discussed the convention on the rights of persons with disabilities, the right to fully participate and self-determination, negative rights versus positive rights, and informal restrictive practices. We shared examples of restrictive practices that we use and spoke of the need for frameworks around restrictions.
The PDF of this PowerPoint is available here To read the Q&A following the session please refer to the abridged abstract summary.
Larry Genstil, PhD, Psychologist, Israel
“Managing Behavioural Issues of the Child with Prader-Willi Syndrome in School”
Presented at the IPWSO Caregivers’ ECHO on June 23rd, 2021. In this session we gained an understanding of social skills and how children with PWS learn differently than other children, role modelling with behaviour rehearsals for specific situations, and reinforcing positive behaviours.
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, IPWSO PPCB Chair, Psychologist, Diakonische Stifung Wittekindshof, Germany
“Basic philosophy of taking care of people with PWS”
Presented at the IPWSO Caregivers’ ECHO on May 12th, 2021. In this session we considered the differences of the situations for people with PWS in countries all over the world; the individuality of each person with PWS and as a consequence, the need of individualized support; and developing the competencies of self-control and independence.
The PDF of this PowerPoint is available here. To read the Q&A following the session please refer to the abridged abstract summary.
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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.