Sign up to our newsletter

Contact Us

Feeling the heat in PWS!

Feeling the heat in PWS!

We have a new guide from our Famcare Board which looks at how to support a person with PWS to manage their temperature. Some time ago our advice line was contacted by a person with PWS who asked how hot their bath should be. This was a good question. People with PWS...
A Mother’s Experience: new report out

A Mother’s Experience: new report out

A Mother’s Experience: a report on the social and psychological experiences of mothers raising children with Prader-Willi syndrome At IPWSO, we engage with families from all backgrounds and cultures to provide support for people with Prader-Willi syndrome globally. It...
New PWS resources for Turkish-speakers

New PWS resources for Turkish-speakers

Thanks to Global Genes we have been able to provide some new translations to benefit the Turkish-speaking PWS community. The International Prader-Willi Syndrome Organisation (IPWSO) is a recipient of the 2022 Health Equity in RARE Patient Impact Grant sponsored by...
New PWS resources for Arabic-speakers

New PWS resources for Arabic-speakers

Thanks to Global Genes we have been able to provide some new translations to benefit the PWS community in Arabic-speaking regions. The International Prader-Willi Syndrome Organisation (IPWSO) is a recipient of the 2022 Health Equity in RARE Patient Impact Grant...
New PWS resources for Mandarin-speakers

New PWS resources for Mandarin-speakers

Thanks to Global Genes we have been able to provide some new translations to benefit the PWS community in China. IPWSO is a recipient of the 2022 Health Equity in RARE Patient Impact Grant sponsored by Global Genes. Thanks to this award, IPWSO’s project entitled...
Endocrinology and Prader-Willi syndrome

Endocrinology and Prader-Willi syndrome

We were delighted to jointly host a webinar on 8th September 2022 with the African Society for Paediatric and Adolescent Endocrinology. We welcomed 50 participants from around the continent of Africa (and beyond) to a webinar to discuss the endocrinology of...