Presented at the 6th International PWS Caregivers' Conference in Berlin, Germany on 21 May 2024 by Christian Blohm, Metalworker, Germany.

In 2022 IPWSO decided to start the initiative to involve people with PWS in the structures of IPWSO (Give people with PWS a voice). The main idea was, that people with PWS themselves develop the process of how to be involved. This presentation gives an overview about the way a group of people with PWS in Germany started this process of being involved in IPWSO. This group follows two main questions:

1. What are our main themes we wanted to bring into IPWSO?
2. How do we want to come in contact with IPWSO and in which way we want to discuss our ideas with and in IPWSO?

In this presentation the ways of working in the group were presented and also the first results and future ideas are described.

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