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Children with rare diseases: Information platform for (newly) affected families

Kinder mit seltene Krankheiten

In Switzerland, around 350,000 children are affected by a rare disease. These are usually discovered in the first years of life and lead to fundamental life changes and reduced quality of life for those affected and their families. In the period after diagnosis, many of these parents do not know what help and support services are available and what they are entitled to. Information is fragmented and it is difficult to find one's way through the information jungle. There is no offer for (newly) affected families in Switzerland, which bundles all information. 

The Association for the Promotion of Children with Rare Diseases (KMSK), together with the ZHAW and HES-SO Valais-Wallis, University of Applied Sciences for Health, wants to develop a web-based information platform for affected families. The aim of this platform is to support affected families efficiently with the necessary knowledge throughout their entire life. The platform can be used free of charge and is openly available on the web. In a first step, the information will be available in German; in a further step, a translation into French is planned.


In collaboration with

  • Overall project management: Förderverein für Kinder mit Seltenen Krankheiten - KMSK : Manuela Stier
  • Zürcher Hochschule für Angewandte Wissenschaften - ZHAW : Johanna Stahl, PD Dr. Florian Liberatore, Irene Kobler