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 diagnostic testing and grants to support conferences and workshops, as well as to learn about the specific challenges facing professionals around the world.
Please find below some recent examples of conferences we have attended.
Aardvark Therapeutics, Acadia Pharmaceuticals, ConSynance Therapeutics, Friends of IPWSO (USA), Gedeon Richter Plc, Novo Nordisk, and Soleno Therapeutics have provided Grants to support IPWSO’s attendance at conferences and the development of educational materials for conference delegates.
Aardvark Therapeutics, Acadia Pharmaceuticals, ConSynance Therapeutics, Friends of IPWSO (USA), Gedeon Richter Plc., Novo Nordisk and Soleno Therapeutics have had no influence over the development or the content of any of the education materials supplied by IPWSO.
ESPE 2024, Liverpool, UK
IPWSO was busy throughout the 3-day Annual Meeting of the European Society for Paediatric Endocrinology which took place in Liverpool from 16-18 November. The meeting attracted over 3000 delegates from across the world, including endocrinologists from Kazakhstan, Indonesia, Ghana, Iceland, Cyprus, Türkiye, UAE, Argentina, Mexico and Pakistan. Many reported that families in their countries would be unable to access genetic testing for PWS in their own countries. We were pleased to provide information on how to get testing paper and access IPWSO’s free diagnostic testing service. Tony Holland, IPWSO’s President, and Dr Charlotte Höybye, Member of IPWSO’s Clinical and Scientific Advisory Board, gave presentations on “Long Term Management and Outcomes in PWS” and “GHT in adults with PWS,” respectively, at a dedicated PWS symposium.
APPES-ISPAE 2024, New Delhi, India
Lantz Yap, and Mrs Shikha Metharamani, President IPWSA (India), hosted our exhibition stand at the 13th Biennial Scientific Meeting: APPES-ISPAE Joint Meeting in Yashobhoomi, New Delhi, India, from 2-5 October 2024. Lantz was pleased to advise that IPWSO was the sole patient-led non-profit among the many pharmaceutical exhibitors.
ICNC 2024, Cape Town, South Africa
Karin Clarke, IPWSO Trustee, and Dr Engela Honey, IPWSO Advisor, hosted our exhibition table at the International Child Neurologist Conference in Cape Town from 6-10 May 2024. Approximately 850 delegates attended coming from all parts of the world including China, India, Turkey, and Pakistan. Our educational resources were well received particularly our 1-page flyer on “Does your patient have PWS?”. IPWSO has a wide range of PWS educational resources, compiled by clinical experts, and made freely available, thanks to the generousity of our sponsors and donors.
ASPAE 2024, Algiers
François Besnier and Maité Tauber represented IPWSO at the 15th Congress of the African Society for Paediatric and Adolescent Endocrinology in Algiers on 7 & 8 March 2024 and met with delegates from Nigeria, Cameroon, Ethiopia and Kenya. They also held a 1-day meeting attracting over 37 families which provided opportunities for discussion, debate and support.
At the plenary session Maithé presented on the “Management of Prader-Willi Syndrome” and Asmahane Ladjouze, President of the Société Algérienne d’Endocrinologie et Diabétologie Pédiatrique (SAEDP), presented a paper on “A clinical follow-up of 46 Algerian patients with Prader Willi Syndrome and endocrinological profile on Prader Willi Syndrome in the Algerian population”.
Dr Fomenky, Paediatric Endocrinologist from Cameroon, reported that attendance at the conference has motivated her to train staff at her hospital to actively look for children who may be undiagnosed, and to develop a screening programme in the hospital’s post-natal unit and in nursery and primary schools.
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 Holland, IPWSO President, and Nick Finer, IPWSO Advisor, enjoy meeting delegates at ESPE 2024.
L-R: Dr Parul, Mrs Shikha Metharamani, IPWSA and Lantz Yap, IPWSO Trustee – APPES 2024.
Karin Clarke, IPWSO Trustee, looking forward to meeting delegates at ICNC 2024!
IPWSO’s representatives at ASPAE 2024, with delegates and conference organisers.
Events
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
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 Diagnosis
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 testing.
Find support in my country
We have contacts in many countries and regions around the world.