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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10.04.2024 | KMSK Knowledge books

KMSK Magazine SELFCARE Rare Diseases

In our KMSK magazine Selfcare, we would like to give you a deeper insight into our daily work. It is a new tool to address our dialog groups and show you what moves our 830 KMSK families. We also want to bring to life how affected families, doctors, employees and patrons perceive and support the work of the association for children with rare diseases.
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15.03.2024 | KMSK Sport Challenge

5. KMSK Sport Challenge

Give children and young people with rare diseases more visibility and quality of life! The 5th KMSK Sport Challenge using the new TeroGo app runs from April 1 to September 30, 2024. We are delighted that more than 2,500 people have already actively participated in the last four years and encouraged friends, relatives, work and sports colleagues to take part! Individuals and company teams can register at any time!
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04.03.2024 | KMSK Knowledge Forum Rare Diseases

Review: 11th KMSK Knowledge Forum "Rare diseases - case management and digitization relieve parents"

The Förderverein für Kinder mit seltenen Krankheiten celebrates its tenth anniversary in 2024 and held the 11th KMSK Knowledge Forum at the KKL Luzern on March 2, 2024. Knowledge empowers parents to engage in dialog with specialists on an equal footing. The forum was moderated by Prof. Stefan Ribler, social pedagogue, social computer scientist and lecturer in social work. We were delighted to welcome Dr. Yvonne Gilli, President of the Swiss Medical Association FMH, Tanja Grossenbacher, affected mother and specialists from the fields of medical genetics, paediatrics, children's spitex and education as speakers.
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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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Patron

Biogen Switzerland AG
Takeda Pharmaceuticals International AG
Interpharma, Association of Research-Based Pharmaceutical Companies in Switzerland
Vertex Pharmaceuticals Switzerland
Sanofi
Pfizer
Innosuisse Innovation Check
Raiffeisen Switzerland
AXA Switzerland
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