Rare

Diseases

Diagnosis of a rare disease - A new path in life begins

Did you know that in Switzerland around 350,000 children and adolescents are affected by a rare disease? affected by a rare disease? This poses major challenges for the families affected families: parents who are on the edge of their strength, Siblings who miss out, financial worries, often isolation and and battles with insurance companies. To support these families after the diagnosis "rare disease" on their new journey through life, the non-profit the non-profit support association for children with rare diseases rare diseases (KMSK) was founded on February 20, 2014 by entrepreneur Manuela Stier .

Since then we have already connected 865 affected families and given them unforgettable Moments of happiness. Since the foundation, we have welcomed more than 11,000 young and old guests to the free family events throughout Switzerland. There are also 855 parents actively involved in the KMSK self-help group Switzerland on Facebook! with us!

Relief for parents is provided through the transfer of knowledge on the topic of rare diseases in children Children. We are close to our wonderful families and learn a lot about their needs about their needs. Based on this, we implement sustainable projects such as the KMSK Knowledge Books on Rare Diseases, the KMSK Knowledge Platform (d/f/i/e) and the annual KMSK Knowledge Forum with live streaming for affected families, specialists and the media.

Thanks to donations financially support affected families with around CHF 3.3 million since 2014 for example with therapies, aids, time out, Mobility, etc. To make this continue to do so in the future, we rely on donations, legacies, patronage contributions and donations in kind.

"The Rare disease diagnosis was a shock. The support association for children with rare diseases (KMSK) supported us right from the start and showed us showed us that we are not alone. Today we are a happy family Family through our somewhat different life". Affected mother

We are grateful for the trust placed in us by our wonderful families and our long-standing donors, patrons, partners, sponsors, countless Partners, sponsors, countless professionals and media companies.

As an independent NPO, we do not receive any money from the public sector. We thank you from the bottom of our hearts for your valued donation.

Presentation of the support association for children with rare diseases: KMSK Magazine SELFCARE - Rare Diseases