Strong together, Rare diseases

We support affected
Families on their way
We support affected Families on their way

The diagnosis of a rare disease pulls the rug out from under affected families, who find themselves in an unknown world after an initial shock.

This is characterized by the worries about their child, administrative and organizational challenges. What help and support services are available? What are they And who will guide them through this unknown jungle? How have other affected families master this enormous task?

The digital KMSK Knowledge Platform Rare Diseases is based on the Initiative of Manuela Stier, founder and managing director of the Förderverein für Kinder mit seltenen Diseases, in in close collaboration with our 710 affected KMSK families (Switzerland-wide), the ZHAW Winterthur, the HES-SO Wallis, competent experts and sustainable thinking sponsors.

May the may the cumulative power of knowledge and experience help the parents of the 350,000 children and Children and adolescents with a rare disease in Switzerland a little easier in their often everyday life a little easier.

Support association for children with rare diseases

Since 2014, we have been putting our heart and soul into helping the approximately 350,000 children and young people affected and their families throughout Switzerland.

To this end, we focus on the following areas:

  • direct financial aid for affected families (since 2014, around 2.2 million has been paid out to affected families)

  • connecting affected families (since 2014, 710 families are in our free KMSK Family Network. To connect them, we hold great family events)

  • Knowledge transfer on the topic of rare diseases for affected families, professionals, media and the public (2022 70 professional articles print/online/TV/radio)

The Association for the Promotion of Children with Rare Diseases relies on donations and legacies from private individuals, support from companies, foundations and business organizations. This is the only way we can continue to sustainably support children and adolescents with rare diseases as well as their parents and siblings in Switzerland. As an independent NPO, we do not receive any funds from the public sector.

Our objectives and partners

Orientation and support for affected families and professionals in the information jungle! "We saw an urgent need for action and developed the integrative KMSK Knowledge Platform Rare Diseases together with the Winterthur Institute for Health Economics of the ZHAW and the University of Applied Sciences Wallis HES-SO ", says the project manager and managing director of the Support Association for Children with Rare Dise ases Manuela Stier.

The KMSK Knowledge Platform contains all important information on support services and offers for affected families. The more than 710 affected KMSK families played a central role in the development process with their knowledge and experiences. The KMSK knowledge platform was developed together with the 710 affected families from the KMSK family network and therefore precisely reflects their concerns and needs. The project thus follows a participatory approach.

Affected families and professionals were involved in the project at different points in time (from initial interviews and surveys to the testing of platform prototypes). In addition, different experts (e.g. from the field of social counseling of children's hospitals) participated in the two-year development of the web-based KMSK knowledge platform.


The Zurich University of Applied Sciences (ZHAW) is one of the leading universities of applied sciences in Switzerland and educates around 14,000 students. In its research and development, the university focuses on central societal challenges Challenges such as "social integration" and "digital transformation". For the university as a social knowledge transformer, the cooperation with actors such as the Förderverein KMSK is central and of great importance. In close cooperation with practitioners, the ZHAW conducts application-oriented research studies that are intended to yield the greatest possible direct benefit to society. A team from the Winterthur Institute of Health Economics was involved in the development of this KMSK knowledge platform.


The HES-SO Valais-Wallis is part of the University of Applied Sciences of Western Switzerland (HES-SO). It educates over 2,800 students and makes a significant contribution to economic and social development and innovation, it makes a significant contribution to economic and social development. Due to its geographical location on the German-French language border, it is a particular concern to the scientific discourse and traditions of both language regions and to build Language regions and to act as a bridge between them. The main features of the university are practice-oriented education and training as well as And further education, as well as (research) projects with a high social social benefit. For example, the HES-SO Valais launched the Certificate course in rare diseases, participates in (research) projects on the topic or (research) projects on the topic or cooperates with the association for children with rare diseases together.



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founded in Japan in 1781, Takeda is now a leading global biopharmaceutical company with over 50,000 employees in 80+ countries. Takeda Switzerland is headquartered in Zurich. The focus of its 90 employees is on the distribution of medicines for the Swiss market. Takeda's main areas of activity are rare diseases, gastroenterology, neuroscience and oncology.
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