News
Follow the latest news from around the world and the international PWS family.
Use our Media Guide for information about how to write and report about Prader-Willi syndrome.
Remembering James (Jim) Gardner
James (Jim) Gardner November 18, 1940 — April 26, 2025 A Champion of the Prader-Willi syndrome community We in IPWSO were sad to hear of the recent passing of Jim Gardner from Minnesota, USA, a much-valued and longstanding member of the IPWSO community, and husband...
IPWSO Welcomes US FDA Approval for first PWS Hyperphagia Treatment
First treatment for hyperphagia in Prader-Willi syndrome brings hope to individuals with PWS and their families around the world. The United States Food and Drug Administration (US FDA) has approved VYKAT™ XR, a significant milestone as the first approved treatment...
Welcome to Margaret Walker, our new CEO!
We are delighted to welcome Margaret Walker as she joins us today as our new CEO. Margaret is a committed association management and public affairs professional with over 20 years’ experience in the field. She has worked with scientific, medical, family and patient...
Do you want to organise a PWS event in your country?
Announcing a new round of funding for PWS Conference and Workshops for 2025! Thanks to the support of Friends of IPWSO (USA), the IPWSO Grants Committee is able to offer funding to individuals and groups who are interested in planning and hosting a PWS event to...
Interested in hosting our international PWS conference in 2028?
Since its first Conference in 1991, IPWSO Conferences have been held in 11 countries on 5 continents. Whatever the size of your country or PWS Association, if you would like to host the 2028 IPWSO Conference, we would love to hear from you. You can find out more about...
New funding for small PWS projects 2025
We have launched a new round of funding for families and professionals to organise PWS projects in countries where they are needed most. IPWSO is offering microgrants for small projects to support the efforts of individuals and groups who are working to improve the...
THE BEST JOB IN THE WORLD!
Things never stay the same, and that’s no different for IPWSO! Next year, we’ll see some of our Trustees complete their tenure of office and we’ll welcome new officers to the IPWSO Board. Thankfully, ex-officers never stray too far from our PWS community and remain...
New funding for small PWS projects 2024
We have launched a new round of funding for families and professionals to organise PWS projects in countries where they are needed most. IPWSO is offering microgrants for small projects to support the efforts of individuals and groups who are working to improve the...
Do you want to organise a PWS event in your country?
New round of funding for PWS Conference and Workshops to be announced soon! Thanks to the support of Friends of IPWSO (USA), the IPWSO Grants Committee is able to offer funding to individuals and groups who are interested in planning and hosting a PWS event to...
We are recruiting for a Fundraising and Communications Manager (UK based)
We are looking for a Fundraising and Communications Manager to join our team. Remote working (must be UK based) £31,000 per annum pro rata (£16,534) Part-time (20 hours per week) Contract (12 months) Closing date is 12 January 2024 at 23:30 (UK time) We’re looking for...
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.