by Nora McNairney | Mar 28, 2023 | News
An update on plans for our 2025 conference Our members usually select our conference venue at our General Assembly, however we did not receive any bids to present at the conference last year. The General Assembly therefore agreed to reopen the process and asked for...
by Nora McNairney | Mar 8, 2023 | Blog
IPWSO interns April and Lauren tell us more about the research going on in China including the work of the PWS Research Group at the Children’s Hospital of Zhejiang University School of Medicine. Introduction Since it was first described in 1956, there has been a lot...
by Nora McNairney | 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 Nora McNairney | Jan 16, 2023 | News
We have launched a new round of funding for families and professionals to organise PWS projects in countries where they are needed most. IPWSO is offering microgrants for small projects to support the efforts of individuals and groups who are working to improve the...
by Nora McNairney | 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 Nora McNairney | Nov 23, 2022 | News
We have launched a new round of funding for families and professionals to organise PWS workshops in countries where events are needed most. Thanks to the support of Friends of IPWSO (USA), the Conference and Workshops Committee of IPWSO is able to offer funding to...
by Nora McNairney | 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 Nora McNairney | Nov 4, 2022 | News
Prader-Willi France held its 25th national day on 15th October 2022, gathering together more than 220 families and professionals. The theme was self determination under the title “What about my opinion?”. Two children and two adults with PWS addressed the...
by Nora McNairney | 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 Nora McNairney | 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...
