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.
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
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
IPWSO is proud to be a member of the following organisations:
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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.
Information for Medical Professionals
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.