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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15.10.2024 | KMSK Knowledge books

KMSK Magazine SELFCARE Rare Diseases N° 02

In spring 2024, we learned about three families who were inadequately diagnosed with a rare disease for their child. We therefore dedicated the second issue of our KMSK magazine SELFCARE to the emotional rollercoaster before and after the diagnosis. In addition, we conducted a survey of 120 families to find out about their experiences and what could be improved. Read testimonials and expert contributions on the topic.
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10.10.2024 | KMSK Knowledge Forum Rare Diseases

12. KMSK Knowledge Forum Rare diseases - the challenging path before and after diagnosis

Experience the exciting panel discussion with affected parents, KMSK President Prof. Dr. med. Anita Rauch, Dr. med. Katharina Wasser, General Manager of Roche Pharma (Schweiz) AG and Prof. Dr. med. Henrik Köhler, KMSK Advisory Board member on the topic of rare diseases - the challenging path before and after diagnosis. The 12th KMSK Knowledge Forum will take place on 28.2.2025, from 10.30 a.m. in Basel in the auditorium of the Roche Tower and will be made accessible to everyone via live streaming.
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04.10.2024 | KMSK Sport Challenge

Review of the 5th KMSK Sport Challenge

The 5th KMSK Sport Challenge ended on September 30 with 457 participants from all over Switzerland. Our goal of collecting 1 million Fredi points was far exceeded. In total, an incredible 3.09 million Fredis were collected! The participants' daily postings clearly showed how much fun they had with the challenge and how motivated they were. A huge thank you to all participants.
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10.04.2024 | KMSK Knowledge books

KMSK Magazine SELFCARE Rare Diseases N° 01

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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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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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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