KMSK KNOWLEDGE FORUM "RARE DISEASES"
Once a year, we organize our free KMSK Knowledge Forum "Rare Diseases" on a specific topic. Presentations and panel discussions create an intensive exchange between affected parents and experts. Not only are current challenges discussed, but there is also room for constructive discussions on new solutions. The KMSK Knowledge Forum is an important source of information for affected families and professionals. At the same time, it attracts the attention of the media and the general public, thus helping to raise awareness. The KMSK Knowledge Forum is broadcast via live streaming and can be accessed free of charge on our website at any time afterwards. This gives affected families and specialists who are unable to attend the event the opportunity to experience the insights gained and the inspiring discussions.
Support association for children with rare diseases
since 2014, the non-profit Association for the Promotion of Children with Rare Diseases has been committed to supporting around 350,000 children and young people affected by rare diseases and their families throughout Switzerland.
Our three focal points:
- Financial
Direct aid: since 2014, more than CHF 3 million has gone to affected families for
Affected families for therapies, mobility, aids and relief.
- Connecting affected
Connecting families: Since 2014, around 10,000 family members have been able to
have been able to take part in KMSK family events free of charge. The Facebook
Support group connects 790 parents and around 830 families are already
Members of the free KMSK Family Network.
- Knowledge transfer
on the topic of rare diseases: for (newly) affected families,
Professionals, health policymakers and the media, six KMSK knowledge books
"Rare diseases" with a print run of 10,000 - 12,000 copies each, as well as the
digital www.wissensplattform.kmsk.ch for healthcare professionals and
(newly) affected Affected families. we would like to thank you for the trust placed in us by our affected families, specialists, long-standing donors, Patrons, partners, sponsors, organizations and the media we receive.
Review: 11th KMSK Knowledge Forum, 2.3.2024
Case management and digitalization ease the burden on parents
The Förderverein für Kinder mit seltenen Krankheit celebrated its tenth anniversary and, to mark International Rare Disease Day, hosted the 11th KMSK Knowledge Forum at the KKL Luzern on the topic of "Case management and digitalization ease the burden on parents".
In a lively panel discussion between Dr. med, Yvonne Gillipresident of the Swiss Medical Association (FMH), Prof. Dr. med. Johannes Rothhead of the Center for Rare Diseases, Lucerne Children's Hospital, Tanja Grossenbacheraffected mother of Fin, Helene Meyer-Jenni, Managing Director of Kinderspitex Zentralschweiz and Melanie Willkeprofessor at the Intercantonal University for Special Needs Education, a huge flow of knowledge was achieved. The KMSK Knowledge Forum was moderated by Stefan Riblerlecturer in social work at the University of Applied Sciences East.
The starting point for the 11th KMSK Knowledge Forum 2024 was the 6th KMSK Knowledge Book Rare Diseases - Case Management and Digitalization Relieve Parents.
The video recording of the 11th KMSK Knowledge Forum can be found here.
And here is the press release.
Review: 10th KMSK Knowledge Forum, 25.2.2023
Insurance benefits, application and enforcement
As part of the International Day of Rare Diseases (February 28, 2023), the 10th KMSK Knowledge Forum of the Association for the Promotion of Children with Rare Diseases took place on February 25, 2023 on the topic of "Insurance benefits, application and enforcement" at the KKL Lucerne. The focus was on the struggle for insurance and support benefits from various perspectives. In a lively panel discussion between Martin Boltshauser (lawyer, head of legal services, member of the management of Procap Switzerland), Irene Weber-Hallauer (social worker specializing in illness and disability), Christina Schönholzer (affected mother), Dr. med. Tobias Iff (FMH paediatrics and adolescent medicine, specializing in neuropaediatrics, Centre for Child Neurology) and Dieter Widmer (Managing Director, IV Office, Canton of Berne), a huge flow of knowledge was achieved in just under three hours.
Click here for the 5th KMSK Knowledge Book "Rare Diseases - Digital Knowledge Platform for Parents and Professionals".
The video recording of the 10th KMSK Knowledge Forum can be found here
Review: 9th KMSK Knowledge Forum, 26.2.2022
Psychosocial challenges in dealing with a rare disease
The diagnosis of a rare disease turns family life upside down. While the medical aspects are usually sufficiently covered, families face a variety of psychosocial challenges. How do you deal with the diagnosis? How to deal with the grieving process? How does a rare disease affect social life? At the 9th KMSK Knowledge Forum, specialists and affected parents discussed, among other things, which strategies help in everyday life and what help is available.
In addition, the 4th KMSK Knowledge Book "Rare diseases - psychosocial challenges for parents and siblings" was published at the beginning of November.
The KMSK Knowledge Forum took place via live streaming for the first time.
Link Video https://youtu.be/BZgcxfszA8c
Review: 8th KMSK Knowledge Forum, 23.02.2019
Genetics, diagnostics and the desire for more children
One of the main aims of the Association for the Support of Children with Rare Diseases is to connect families and enable them to share wonderful moments. Another important goal is to impart knowledge. The 8th KMSK Knowledge Forum proved that these goals can go hand in hand. For this event, we invited over 200 affected children and their families to a varied day at Kindercity Volketswil free of charge.
While the parents listened to the panel discussions on "Genetics, diagnostics and the desire to have more children", the focus for the children on this day was solely on having fun. And this was more than present. Whether painting clothes hangers, letting off steam on the knowledge trails or posing with Princess Elsa, Superman or Spiderman - the children were in their element. The event was supported by over 60 helpers, speakers and photographers.
Video: Welcome speech by Prof. Dr. med. Thierry Carrel
Video: Speech "Gene analysis - risk minimization", Prof. Dr. med. Anita Rauch