Supporting people with PWS requires collaboration, shared expertise, and ongoing conversations between professionals, families, and people with PWS themselves.
Across the German-speaking countries, a new and inspiring network of PWS Competence Centres is helping to support this. Under the coordination of Norbert Hödebeck-Stuntebeck, psychologist, the network is bringing together institutions, professionals, and parent associations with a shared goal of strengthening support for people with PWS with a focus on pedagogical and psychological aspects.
The network currently includes 13 institutions across four countries, including eight institutions in Germany, two in Austria, two in Switzerland, and one in the Netherlands. Five institutions have already been officially designated as part of a network of PWS Competence Centres, while the remaining member institutions are currently in development.
The aim of the network is to involve as many institutions providing PWS-related services as possible across the German-speaking region, helping to ensure broader access to high quality, specialist offers for people with PWS and their families with the focus on pedagogical and psychological support.
A strength of the network is its commitment to collaboration across a variety of different disciplines and
lived experience. During the network meeting held in March 2026, representatives from the PWS parent associations in Germany, Austria, Switzerland, and the Netherlands came together with professionals from participating institutions and board members of the national PWS associations to exchange ideas and coordinate future planning and service development.
The network also plans to continue engaging in conversations with people with PWS, as well as experts from the medical, therapeutic, and support sectors. This shared approach reflects a core belief that meaningful and effective support can only be achieved when different perspectives come together.
The network believes that people with PWS, families, clinicians, therapists, and professional support workers all bring valuable, compassionate and independent perspectives.
“In the name of the members I can say, that our big dream is, to offer high quality and sustainable support for people with PWS and their families close to their town!”
– Norbert Hödebeck-Stuntebeck
Alongside the wider collaboration happening across the network, each competence centre will provide practical support for people with PWS and the people around them, covering five main areas, centring pedagogical and psychological themes:
- Sharing information: helping people understand PWS by collecting reliable information and passing it on to families and professionals.
- Connecting people and services: help link families, specialists, and organisations so that useful information reaches the right people.
- Offering counselling: providing guidance,emotional support and development for people with PWS and their families and helping them navigate challenges.
- Providing training: running workshops or courses for caregivers, parents, professionals, and for people with PWS themselves.
- Carrying out assessments: helping families and professionals understand behaviour, needs, and strengths, and using that insight to suggest the most appropriate support options.
The work of the network continues to evolve, with further discussions and planning already scheduled for the next meeting in May 2027. As the collaboration grows, the shared ambition is to strengthen specialist support, encourage knowledge-sharing across the region, and improve quality of life for people with PWS and their families.