Educational Outreach
Attendance at medical conferences helps us to connect with doctors who may have little information about PWS, as well as to engage and learn from doctors who are already actively involved in supporting people with PWS in their countries and regions. Hosting awareness booths at conferences enables us to share information about the services and resources we offer, including free genetic screening and grants to support conferences and workshops, as well as to learn about the specific challenges facing professionals around the world.
See below for some recent examples of conferences we have attended.
European Psychiatric Association Congress – Prague, Czechia
Tony Holland and Nora McNairney represented IPWSO at the European Psychiatric Association (EPA) Congress in Prague from 28-31 March, where Tony presented our poster on meeting the mental health needs of people with PWS.
We were very pleased to meet psychiatrists, psychologists and mental health nurses from Kosovo, Croatia, Turkiye, Serbia, Albania and Montenegro, amongst others.
During the event, delegates were invited to complete a short survey to assist our understanding of how PWS mental health services are delivered globally, helping us identify gaps in service provision.
South African Association for Child and Adolescent Psychiatry and Allied Professionals (SA-ACAPAP) Cape Town, South Africa
Karin Clarke, our Vice President, hosted our stand at the South African Association for Child and Adolescent Psychiatry and Allied Professions (SA-ACAPAP) congress in Cape Town from 12-14 March .
This was the first conference that IPWSO has attended that specifically targeted mental health professionals. Delegates were very interested to learn more about the syndrome and appreciated us sharing our recent publication on “Improving mental Health and wellbeing in people with PWS”
Karin presented a poster on understanding the mental health needs of children and adolescents with PWS.
Paediatric Association of Nigeria – 57th Annual Scientific Conference, Ogun State, Nigeria
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).
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.
Tony discusses our poster on “Meeting the mental health needs of people with the complex neurodevelopmental condition, PWS: a major challenge for mental health services“.
Karin at SA-ACAPAP in March 2026, Cape Town, displaying many of our resources.
Dr Ashubu discussing IPWSO’s educational materials with delegates at our booth.
Events
2025
February – African Society of Paediatric Endocrinology (ASPAE), Abidjan, Cote d’Ivoire.
April – The Middle East and North African (MENA) Conference for Rare Diseases, Abu Dhabi, UAE.
April – Kenya Paediatric Association Annual Scientific Conference, Monbassa, Kenya.
May – Joint Congress of the European Society for Paediatric Endocrinology and the European Society of Endocrinology, Copenhagen, Denmark.
July – 16th Congress of the European Paediatric Neurology Society, Munich, Germany.
September – Arab Society for Paediatric Endocrinology and Diabetes, (ASPED), Dubai, UAE.
November – Global Newborn Society Inagural Conference, Sweden.
2023
February – African Society of Paediatric Endocrinology (ASPAE), Yaoundé, Cameroon.
May – European Congress of Endocrinology (ECE), Istanbul, Turkey.
September – MetaECHO® Global Conference, Albuquerque, New Mexico.
October – 6th Rare Summit, Cambridge, UK
2024
March – African Society for Paediatric and Adolescent Endocrinology, Algiers, Algeria
May – International Child Neurology Conference – Cape Town, South Africa
October – 13th Biennial Scientific Meeting: APPES-ISPAE Joint Meeting, Yashobhoomi, New Delhi, India
November – Annual Meeting of the European Society for Paediatric Endocinology, Liverpool, UK
2019
May – European Congress of Endocrinology (ECE), Lyon, France.
Septemeber – European Society of Paediatric Endocrinology (ESPE), Vienna, Austria.
2021
May – European Congress of Endocrinology (EC) – Online.
International Community
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.
Information for
Families
Find useful guides, research and information to help families manage PWS.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Information for
Professional Caregivers
Sharing international knowledge among professional service providers throughout the world.
What is PWS?
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome and it affects all races and both sexes equally.
Free Genetic Screening
If you suspect your patient has Prader-Willi syndrome, based on the clinical signs and symptoms, but are unable to access testing in your country, then you may be able to access free genetic screening.
Find support in my country
We have contacts in many countries and regions around the world.