International Prader-Willi Syndrome Organisation (IPWSO)’s Post

Thank you to Norbert Hödebeck-Stuntebeck who gave the Pam Eisen Lecture at today's conference in Berlin. Norbert spoke about the future of care for people with PWS. The Pam Eisen Lecture holds a special place in our hearts here at IPWSO. In 2005, Pam Eisen, then President of IPWSO, recognised the need to integrate professional caregivers into the structure of the organisation as an increasingly visible and important part of the “world of care” for people with PWS. Over the next few years, she further developed this concept with committed caregivers from various countries, which ultimately resulted in the founding of IPWSO's Professional Providers and Caregivers Board (PPCB) during the 7th IPWSO conference in Taiwan. At each Caregivers’ Conference, we take the time to honour Pam’s legacy, reflecting on the tremendous impact she made for caregivers and for those with PWS we support. Norbert's lecture today briefly outlined the journey from the initial idea to the current standing of PWS caregivers within the wider PWS community. The main focus of his presentation highlighted ideas for future developments in the care of people with PWS. #PWSCare24

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