As part of our work celebrating IPWSO’s 30th Anniversary in 2021, we asked members of the global PWS community to make films to highlight the challenges they face, as well as the achievements and developments that are happening around the world.
We hope you find these films interesting, please share them with your friends and colleagues.
The Establishment of IPWSO: Jean’s Story: IPWSO Founder Jean Phillips-Martinsson talks about her life with son Anders and the path to establishing IPWSO.
Raising a Child with Prader-Willi syndrome: Parents from Hungary, Morocco and Columbia talk about their experiences raising a child with Prader-Willi syndrome.
Prader-Willi syndrome Around the World: Parents from Qatar, Malaysia and Norway reflect on how Prader-Willi services differ in their country.
Learning from People with Prader-Willi syndrome: People with PWS living in Austria, India and Ireland share stories about their lives.
Emerging Clinical Research and Practice in Prader-Willi syndrome: Dan Driscoll, Chair of IPWSO Clinical and Scientific Advisory Board talks about clinical research and practice.
Emerging Social Care Research and Practice in Prader-Willi syndrome: Norbert Hödebeck-Stuntebeck, Chair of IPWSO Professional Providers and Caregivers Board talks about the future of social care for people with PWS.
Emerging Behaviour and Mental Health Research and Practice in Prader-Willi syndrome: IPWSO President Tony Holland presents on issues relating to behaviour and mental health.
The Role of Prader-Willi syndrome Associations: Representatives from Prader-Willi Ecuador, Prader-Willi France, and the Prader-Willi Charitable Foundation in Russia talk about the impact of their associations.
The Role of Advocacy in Helping People with Prader-Willi syndrome and Their Families: In this film Samuel Agyei Wiafe from Rare Disease Ghana Initiative talks about the role of advocacy in supporting people with rare diseases including Prader-Willi syndrome.
If you would like to make a film or share your photos or story to help raise awareness of PWS, then please get in touch. Thank you.