Sign up to our newsletter
Contact Us
…Asia. Do you have the time and energy to help us move forward in our work? Do you know someone who would be perfect for the role? Please find below an information sheet about the role of a Trustee and an application form. If you would like more information on what being an IPWSO Trustee involves, or an informal chat please contact our CEO, Marguerite Hughes. The closing date for applications is 7 March 2022….
…new residents and derailed all our fundraising initiatives. We are hoping for a miracle to make us survive 2020 and then tackle 2021 with new vigor, passion and love. Please watch Liezl’s 4 minute video and if you feel that you can help in any way, please make contact via +27 72 243 5251 or huishenri@023.co.za or visit www.henriwarnichfoundation.co.za for more information. Please share to help us spread the message. < Back to Our Blogs…
It’s one week until Rare Disease Day which takes place on Monday 28th February. Rare Disease Day is, “the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.” It was created in 2008 by EURORDIS along with more than 65 national alliance patient organisation partners. This year, there are over 600 events being held for Rare Disease Day with…
…individual’s with PWS and I feel confident and enthused about my role in this enterprise as a result of the knowledge gained and the relationships established at the IPWSO Caregiver’s Conference. I look forward to developing the professional and personal relationships we established at the conference through ongoing dialogue (thank you Norbert and Hubert for the word) and sharing of information and experiences, and can’t wait to see you all again next year in Cuba….
…at least 6 months after the project has concluded to discuss the project’s impact and what, if any, projects are planned to build on the impact/knowledge gained. Priority will be given to applications from: underserved countries countries where there is little awareness of PWS individuals/groups that struggle to access or develop services for people with PWS in that country individuals/groups who have not previously received funding from IPWSO individuals/groups who have previously supported people with…
…little awareness of PWS. Applications will be assessed in terms of: applicants’ past experience of supporting people with PWS; applicants plans to continue to support people with PWS after the workshop/conference concludes; the reasonableness of the amount claimed; the importance of providing support in this country/region; the number of people expected to benefit; the consideration, where reasonable and possible, of reducing the environmental impact of the conference/workshop. The closing date is 31 July 2024. …
…with Disability (UN CPRD), that are clear – children have a right to education and countries have a duty to ensure that education is available to all Having national laws stating this is essential as these laws establish the right, however, the questions that follow are: How should the special needs of people with disabilities in general and PWS specifically be met? The second question is: What to do when a school placement breaks down?…
Verena Gutmann, chair of our Famcare Committee introduces our latest publication: In our newest Famcare article you can read about the importance of a well-structured day for adults with PWS and the main features to be considered when embarking on such activities. We know there are different possibilities for work and occupation in countries worldwide; we also know that people with PWS have a range of abilities as well as needs to consider. Many people…
…to submit proposals to hold the 12th International Prader-Willi Syndrome Organisation conference in 2025. This is an exciting opportunity to bring international speakers and delegates to your country. To raise awareness, reach new families and share important research and developments in the support and treatment of people with PWS. The new deadline for proposals is 31 January 2023. If you have any questions about the process please contact us and we can arrange a meeting….
Find useful guides, research and information to help families manage PWS.
The latest medical and scientific research and information, plus guides into common medical issues affecting people with PWS.
Prader-Willi syndrome is a complex genetic condition. Various studies have shown that between 1 in 15,000 to 25,000 children are born with Prader-Willi syndrome.