by Agnes Hoctor | Dec 2, 2022 | Blog
Our Famcare Board has written a fantastic collection of guides to help families navigate the key issues affecting people with PWS. A guide to rituals and obsessions A guide to the transitional years After the Diagnosis, Relief and Acceptance Basics of a healthy adult...
by Agnes Hoctor | Nov 22, 2022 | Blog
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...
by Agnes Hoctor | Oct 20, 2022 | Blog
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...
by Agnes Hoctor | Oct 17, 2022 | Blog
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...
by Agnes Hoctor | Oct 13, 2022 | Blog
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...
by Agnes Hoctor | Oct 13, 2022 | Blog
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...
