IPWSO Leadership ECHO® Videos
Materials from IPWSO Leadership ECHO® are available here.
Maithé Tauber, Professor of Pediatrics, University of Toulouse and Director of the Reference Centre for Prader-Willi syndrome, France
“New Data in PWS and Perspectives”
Presented at the IPWSO Leadership ECHO on February 8, 2022. Maithé’s presentation includes an Overview of PWS; Mental Health; Endocrine and Metabolic Troubles; Scoliosis, COVID 19; and Therapeutic Perspectives. Maithé first gave a brief summary of previously known data, then went on to present new data of her research centre in Toulouse. They are understanding more and more the various genes that are responsible for the features of PWS.
The PDF of this PowerPoint is available here. You can read a summary of the discussion here.
Azhar Talib, President Persatuan Sindrom Prader-Willi Malaysia
“Developing a National Association”
Presented at the IPWSO Leadership ECHO on January 11, 2022. Azhar’s presentation illustrated the importance of setting clear Vision, Mission and Objective, the value of having a strategic Roadmap, developing an Action Plan, and how to mobilize, empower and build up a Network. Prader-Willi Malaysia has had great success since it began in 2016 and is a fine example of the impact a PWS Association can make.
The PDF of this PowerPoint is available here. You can read a summary of the discussion here.
Anthony Isles, Professor of Molecular and Behavioural Neuroscience, Cardiff University, UK
“How basic science research is advancing our understanding of PWS”
Presented at the IPWSO Leadership ECHO on November 30, 2021. Anthony’s presentation gave us an understanding of what basic research with cell or animal models can tell us about PWS, and how this can help inform therapeutic developments, and gave us an appreciation of the limitations of cell or animal research into PWS.
The PDF of this PowerPoint is available here. You can read a summary of the discussion and the Q&A here.
Diane Webster, Research Director, PWRFA, Australia
“Improving clinical trial participation”
Presented at the IPWSO Leadership ECHO on November 30, 2021. Diane’s presentation helped us to consider how we might accelerate the development of new drugs for PWS by improving enrolment in clinical trials. We discussed the barriers to trial participation, expanding our recruitment pool, what’s working well, and the importance of finding the right trial.
Please click here for a PDF of the PowerPoint. You can read a summary of the discussion and the Q&A here.
Diane also referenced a talk by Nathalie Kayadjanian on “Clinical Trials for PWS” as an excellent resource if you would like to learn more about the topic.
Gina O’Brien, Utah, USA
“My sibling experience”
Presented at the IPWSO Leadership ECHO on November 2, 2021. In this session, Gina discusses her experiences growing with her wonderful brother, Ashley, who lives with PWS. They have a very special relationship which they maintain long distance using Facetime to talk. Ashley loves when Gina shows him animals like her dog, and they sing along to songs that Gina plays on her ukulele.
In this session Gina reveals that whilst life has not always been easy, she would not change Ashley for the world! He has been her teacher. He has enriched her life and made her thankful and appreciative of the small things – which go unnoticed by so many of us. This is an inspiring story of a very special bond.
Please click here for a PDF of the PowerPoint.
Marguerite Hughes, IPWSO Chief Executive Officer, Ireland
“The role of national PWS Associations in improving the lives of people with PWS and their families “
Presented at the IPWSO Leadership ECHO on October 5, 2021. Marguerite’s talk covered areas including; The roles of PWS associations; Key concepts to consider; Common challenges facing PWS associations. Together we are stronger and finding support from your PWS Association can feel like you’ve found your second family. Some of the challenges that came out in the discussion were how to plan and achieve long term goals, define the needs of the community, and find a shared understanding of priorities. It’s important to consider how you make an organization sustainable over time, and measure its impact.
The PDF of this PowerPoint is available here.
James O’Brien, Chair, PWS Australia LTD
“Reaching out across Australia: Bringing State associations together with a united vision “
James O’Brien, Chair, PWS Australia, discusses the challenges and motivations that brought State associations across Australia together to investigate amalgamation. James describes how the newly formed PWSA Ltd developed their vision, mission, values, and structure and is now setting about building organisational and individual capacity. Their current and future plans are innovative and ambitious and are underpinned by the UN Convention on the Rights of People with Disabilities. Download a pdf of this presentation
Hana Verichova, Head of Prader-Willi Czech Republic
“Reflections on Prader-Willi Czech Republic”
Hana Verichova, Head of Prader-Willi Czech Republic, reflects on the organisation since its establishment in 2003; a few parents with little experience gave their free time to reach out to others. Hana describes how, by raising public awareness of the syndrome through the media, older people, previously undiagnosed, were identified and consequently supported. The importance of networking, attending conferences, engaging with other bodies such as IPWSO and rare disease organisations, has been invaluable. In January 2021 the organisation opened the first group home for people with PWS in the Czech Republic. Download a pdf of this presentation.
Berit Otterlei, PWs Norway
“PWS Norway – Still going strong after 35 years!”
Inspired by her daughter, an adult with PWS who, as a tandem cyclist, recently conquered a mammoth 85km trek, Berit Otterlei advises newly established groups: –
- be goal driven,
- take one step at a time,
- reach out for support,
- do not be overwhelmed by comparing your starting point with that of others, and
- believe that everything is possible!
Berit describes some important factors needed to build a successful PWS organisation. Download a pdf of this presentation.
Anne Sakaris, Tasmania, Australia
“Managing Emergencies”
Anne Sakaris is a parent of an adult with PWS. Anne lives in Tasmania and has been involved in the establishment of a support network for families of children with PWS for over 10 years; she continues to be a contact point and to provide training sessions in the State.
In this session, Anne demonstrates how the effective management of an emergency starts with how we, as advocates and carers for people with PWS, respond in a challenging situation, and how in order to respond effectively, we need to have a well-resourced, accessible, emergency tool kit close to hand, and built with the involvement of the person with PWS in quiet, reflective times. Using the Emergency Management Cycle model, Anne considers the four key elements of Emergency Management – preparation, response, recovery and mitigation.
Anne references some helpful resources to include in your toolkit:
- IPWSO Medical Alert Booklet which has been translated into many languages.
- Information for families when a person with PWS is in trouble with the law.
This presentation will provide encouragement and hope to all those facing challenging situations as well as essential information for those who mentor others on this journey.
Elizabeth Fistein, Psychiatrist and Clinical Ethicist
“Ethical principles: managing individual choice and the risk of harm when supporting people with PWS”.
Elizabeth Fistein is a Psychiatrist & Clinical Ethicist, medical educator, and researcher, with a particular interest in issues concerning consent to medical treatment and potential justifications for treatment in contexts where consent cannot be given. Elizabeth is a member of the IPWSO Policy Committee and is currently working on a project using ’empirical ethics’ to develop guidelines on the use of potentially restrictive practices to manage risks associated with hyperphagia in PWS.
In this session Elizabeth examines the four principles of bioethics and how they might apply when considering the person with PWS. Elizabeth discusses approaches to autonomy and how this varies over time and across cultures. She then considers various legal frameworks, including the UN Convention on the Rights of Persons with Disabilities, that might assist us in thinking about the inherent tensions and different ways of balancing these principles. A pdf copy of Elizabeth’s presentation can be found here.
Our Challenge, presented by Marguerite Hughes, CEO, IPWSO, highlighted a potential dilemma for a person with PWS and their family and carers, of a desire by the person with PWS to learn to drive. A summary of the discussion can be found here.
Maria Guilia Marini, Healthcare Area, Fondazione, ISTUD, Italy
“Narrative Medicine Research – PRAXIS – Prader-Willi eXcellence in care with Story taking”.
Very many thanks to Maria Giulia Marni and colleagues, whose presentation highlights the need to better understand and respect the various intelligences that are evident in people with PWS. This research, conducted by ISTUD, illustrates how many people living with PWS are progressive, open to positive futures and have aspirations that challenge us to respond in new ways. Maria also considers the role of the carer, the impact of COVID, and medical perspectives. A pdf copy of this presentation can be found here together with the BMJ publication: “Caring and Living with Prader Willi syndrome in Italy: integrating children, adults and parents’ experiences through a multicentre narrative medicine research“. This is an open access document.
Chris Smith, Senior Paediatric Dietitian, Royal Alexandra Children’s Hospital, UK
“PWS Dietary Management”
In this session Chris Smith, a paediatric dietitian with over 18-years’ experience in clinical dietetics, presents on PWS dietary management.
Chris emphasises the importance of maximising the benefits of good nutrition and growth and minimising the risks that may be associated with poor nutrition or sub-optimal growth. His passion for his job is clear. Seeing the results of good nutrition in clinical trials, as evidenced by the statistics, gives him great satisfaction and encouragement, however the real joy is in witnessing the development and growth of his patients over weeks, months and years as they benefit from the application of this knowledge and understanding.
Flaminia Macchia, Executive Director and Hlawulani Mkhabela,Outreach and Engagement Manager, Rare Diseases International
“International Advocacy and Global Collaboration for rare diseases”
At this session, Flaminia Macchia, Executive Director and Hlawulani Mkhabela, Outreach and Engagement Manager, discuss RDI’s vision for a world where PLWRD and their families experience a better life through better recognition and support, improved health and social services. Specifically, Flaminia and Hlawulani consider how RDI:
- advocates for rare diseases as an international policy priority,
- represents PLWRD and their families at international institutions and fora, and
- work to enhance the capabilities of members, such as IPWSO, through knowledge exchange, networking, mutual support and joint actions.
Larry Genstil, PhD, Psychologist, Israel
“The child with PWS in the school”
“This talk has to be presented and discussed with every parent, kindergarten school, and caregiver who has a person with PWS in their care”.
High praise indeed from a participant at Larry Genstil’s presentation on “The child with PWS in the school. In this session Larry provides a comprehensive overview of how to create a highly structured and consistent school environment to best fit the needs of the child with PWS.
Read more about the topics Larry addresses and the discussion that followed which provide valuable insights and links to helpful resources.
Elizabeth Dykens, Vanderbilt University, Tennessee
“Food is a poisonous drug” – what young people with PWS think about living with and curing their syndrome.
People with PWS have important perspectives to share about themselves, their syndrome and future treatments. Themes around hunger, food, anxiety, behaviour, new medicines, cures, acceptance of the syndrome, public awareness and advocacy are explored in a qualitative study undertaken by Elisabeth Dykens and colleagues, Elisabeth Roof and Hailee Hunt-Hawkins. The insights offered by people with PWS stand to deepen our understanding of the PWS phenotype and to inform future clinical trials.
Nathalie Kayadjanian, Independent Consultant and Expert in Translational Biomedical Research for Rare Diseases
“Clinical Trials for PWS”
This presentation provides us with an understanding of clinical trials – the terms, concepts and the drug development process. Nathalie focuses on PWS and provides an overview of the active drug trials for hyperphagia and behavioural challenges and considers the HQ-CT as a measure for hyperphagia in PWS. The opportunities, difficulties and lessons learned are explored. Nathalie concludes by highlighting the crucial role that caregivers play in the process, and in ensuring that clinical trials are made possible.
Tony Holland, President, IPWSO
“Fostering links with services in your country and acquiring knowledge to prevent and manage behaviour and psychiatric problems”
Tony asks the question about how we as leaders in PWS in our countries might help develop the services and supports that are needed to prevent, detect, manage and treat people with this syndrome. Some countries have well developed systems, others less so. However, by sharing experiences through the IPWSO ECHO® Leadership Sessions we can all learn from each other and help map a way forward.
Essential components are explored including accessing to knowledge for health professionals, educationalists, parents and the wider community, access to guidance to enable understanding, and access to professional support.
Tony poses some questions that we might ask of our decision makers, such as whether a “Rare Diseases Plan” exists – an expectation of the World Health Organisation for all governments – and, if that plan does exist, does it recognise PWS?
Georgina Loughnan, Prader-Willi syndrome Specialist Clinic, Metabolism and Obesity Services
“Integrated Clinical Care for People with PWS”
Georgina reflects on her 30-year career working with people with PWS and how she and others set about establishing an integrated clinical care facility – the PWS Specialist Clinic, Metabolism and Obesity Services – at the Royal Alfred Hospital, New South Wales, Australia. This is more than just a clinic; it is a centre for developing expertise, research and training, a knowledge hub – providing guidance to other medical specialism on the management and treatment of people with PWS – a provider of holistic care, and moreover, for people with PWS and their families, it is the go-to place in times of difficulty.
“Take me to the Royal Alfred – they understand me!”
Georgina provides us with insight into a model that may work in your country and advocates not to be deterred by a lack of funding or setbacks. Start small, find a willing doctor or clinician and build their expertise, knowledge and service, by encouraging others to use the same professionals.
Lynn Garrick, Programme Director for AME Community Services, Minnesota, USA
“Meaningful Work for people with PWS”
Lynn reflected on her attendance at an IPWSO Conference in Germany and how she and colleagues were inspired to establish the ‘Harmony Farm and Garden’ which provides meaningful work for adults with PWS in Minnesota.
The subsequent discussion and challenges provided some useful insights into other countries and their approach; François Besnier, PWS, emphasises the need for social inclusion in his report.
Susanne Blichfeldt M.D, Denmark
“Supporting Young Children with Prader-Willi syndrome and their Families”
Susanne Blichfeldt, neuropaediatrician and parent of an adult with PWS, focuses on how best to support a child with PWS in the family and wider community. Susanne highlights the importance of effective communication with siblings, grandparents, neighbours, educationalists, clinicians and allied professionals. The “gift of play” is emphasised and the pleasure of watching the child develop, seeing the child happy and healthy in a supportive family environment, and the satisfaction of knowing that carers are doing their best, is all achievable once there is agreement to the strict adherence of ground rules.
The “Challenges” presented by representatives from Spain and Romania reflected the difficulties faced by new parents and families after a diagnosis of PWS and illustrated how, even within countries, equality of access to treatments and social and financial support varies. This is a common experience across countries; participants discussed the need to develop “Best Practice Guidelines” as a starting point in any campaign to influence change.
Professor Nick Finer, UCL
“Virtual clinics in the COVID-19 era and beyond”
In this session Professor Nick Finer explores how technology can be used to good effect in the delivery of healthcare through virtual online clinics and how COVID-19 has accelerated the need for new ways of thinking about practices. This is especially relevant when we consider rare diseases and how we, as leaders in PWS, might harness the opportunities and address the challenges presented in this fast-changing environment for the benefit of people with PWS.
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.