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.
Zurich University of Applied Sciences (ZHAW)
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.
Biogen Switzerland AG
Takeda Pharmaceuticals International AG
Interpharma, Association of Research-Based Pharmaceutical Companies in Switzerland
Vertex Pharmaceuticals Switzerland
Sanofi researches, develops and provides new opportunities for people with rare diseases The more than 350 million patients and their families worldwide often face a long journey of testing, misdiagnosis and consultation with specialists. Sanofi is committed to accelerating this process by providing sustainable, innovative treatments.
Pfizer develops innovative medicines that help prevent, cure or make diseases more tolerable. The goal is for everyone who benefits from Pfizer therapies to receive them. Progress creates hope, and with it the reasonable prospect of a healthier world.
Innosuisse Innovation Check
Innosuisse finances science-based innovation projects that industry partners and private or public organizations carry out together with a research partner. In this way, novel products, services or processes can be jointly developed. Innosuisse supports projects in all subject areas.