by IPWSO | Mar 1, 2023 | Blog
IPWSO Vice-President, François Besnier, attended the ASPAE conference in February 2023. I was very pleased and motivated to represent IPWSO at the 14th Congress of the African Society of Pediatric and Adolescent Endocrinology which was held in Yaoundé, Cameroon from...
by IPWSO | 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 IPWSO | 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 IPWSO | 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 IPWSO | 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 IPWSO | 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...
