Rare Diseases, KMSK Knowledge Platform, www.kmsk.ch

KMSK Knowledge Platform
for parents/professionals
KMSK Knowledge Platform for parents/professionals

Welcome to the digital KMSK knowledge platform Rare Diseases, which is aimed at families of children and adolescents with rare diseases and professionals.

On this page, affected families and professionals can find relevant information on contact points, professionals and support services - clearly arranged and independent of the child's medical diagnosis. The knowledge platform serves as a central point of contact to simplify the search for information. It also provides concrete assistance on who to contact in the social and health care system with which concerns. Our primary goal is to relieve affected families with this information service so that they can master all the organizational, administrative, psychological and financial challenges with less effort. For professionals, the knowledge platform is intended to be a reference work to help them in their work with affected families.

If you are looking for something specific, enter the term that is important to you in the search bar or browse through the topics in the tile view.

You can make suggestions for adaptations and additions directly in the Update form with a corresponding note.

Please note that this information and contact points have been compiled to the best of our knowledge and belief.

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02.03.2024 | KMSK Knowledge Forum Rare Diseases

11. KMSK Knowledge Forum "Rare Diseases - Case Management and Digitalization Relieve Parents"

As part of the International Rare Disease Day (February 29, 2024), the 11th KMSK Knowledge Forum "Rare Diseases" on the topic of "Case Management and Digitalization Relieve Parents" will take place at the KKL Luzern on March 02, 2024. The focus is on the coordination and implementation of numerous appointments. Until now, this Herculean task fell to parents as a matter of course. Case management is a process in which parents work with the professionals involved to determine how they need additional support in terms of organization, medical emergencies and complex psychosocial issues.
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25.10.2023 | KMSK Crowdfunding

CROWDFUNDING: Donation for Cyrill

Cyrill (13) has multiple gene mutations. Unfortunately, not all of them are described in the literature. So Cyrill has no clear diagnosis until today. The genetic obesity makes his everyday life very difficult, besides many other things. Consequences have already occurred. In order to reduce these and to avoid further ones, the family is dependent on external help. Since his disease has no name, the IV and the health insurance do not pay for coaching. The family already helps as good as they can - but Cyrill needs the external support to have a better future.
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03.10.2023 | KMSK Knowledge books

6. KMSK Knowledge Book "Rare Diseases - Case Management and Digitalization Relieve Parents"

In the 6th KMSK knowledge book "Seltene Krankheiten - Case Management und Digitalisierung entlastet Eltern" (Rare Diseases - Case Management and Digitalization Relieves Parents), we address the challenges in the interaction between parents, physicians and other stakeholders, allow affected families and specialists to have their say and point out possible solutions. Available free of charge from the end of October 2023! Pre-order available now, also larger quantities. Delivery and PDF at www.kmsk.ch/wissensbuecher-seltene-krankheiten
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Registration for the 10th KMSK Knowledge Forum Rare Diseases, Feb. 25, 2023, 10:30 a.m.-3 p.m
25.02.2023 | KMSK Knowledge Forum Rare Diseases

Review: 10th KMSK Knowledge Forum Rare Diseases

In the context of the International Rare Disease Day (February 28, 2023), the 10th KMSK Knowledge Forum of the Association for the Promotion of Children with Rare Diseases on the topic of "Insurance Benefits, Application and Enforcement" took place at the KKL Luzern on February 25, 2023. The focus was on the struggle around insurance and support services from different perspectives.
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Digital Knowledge Platform KMSK - Rare Diseases
19.10.2022 | KMSK Knowledge Platform Rare Diseases

Knowledge platform KMSK for parents and professionals

The aim of the Support Association for Children with Rare Diseases is to continuously and sustainably promote the transfer of knowledge on the topic of children with rare diseases. We are currently developing an English and French version.
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Biogen Switzerland AG
Takeda Pharmaceuticals International AG
Interpharma, Association of Research-Based Pharmaceutical Companies in Switzerland
Vertex Pharmaceuticals Switzerland
Innosuisse Innovation Check
Raiffeisen Switzerland
AXA Switzerland
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