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International Advocacy

We engage with international organisations to advocate on behalf of people with Prader-Willi syndrome at a global level. It is important for us to work with other groups across the fields of rare diseases, disability and human rights to ensure that the particular needs of people with PWS and their families are included in policy and decision-making.


A rare disease such as PWS affects only a small percentage of the population, but collectively rare diseases are not rare, affecting over 300 million people worldwide. The common challenges affecting people with rare diseases must be tackled internationally as well as ensuring that specific challenges are also highlighted.

We are proud to support the Universal Health Coverage for Rare Diseases  campaign developed by RDI and EURORDIS. The campaign aims to enable patient organisations and the public to call for Universal Health Coverage (UHC) policies and programmes that include rare diseases.

It is particularly important that the needs of people with PWS are represented in this campaign given the specialised care and treatment that is often required to manage the syndrome.

UHC toolkit

Unleashing future potential: Prader-Willi syndrome in Africa – written by Heba Siddiqa for IPWSO, July 2023


Cover of report

A Mother’s Experience: a report on the social and psychological experiences of mothers raising children with Prader-Willi syndrome – written by Vandana Venkat for IPWSO, August 2022


Front cover of report

The price we pay: a report on the financial costs of raising a child with Prader-Willi syndrome around the world – written by Marguerite Henry for IPWSO, September 2021

Price we pay report cover

IPWSO Guide to the world of rare diseases – written by Tegan Elliott for IPWSO, September 2020


Baby wearing pink stripy baby grow

Our Memberships

IPWSO is proud to be a member of the following organisations:

Eurordis logo
Global Genes RARE Foundation logo
PWS Clinical Trial Consortium logo
Bond logo
HIFA logo
Rare Disease Day logo
Bond logo
NORD logo
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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.

three adults and a child smiling

Information for

Find useful guides, research and information to help families manage PWS.

One man one lady at conference

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?

Translated Guides

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