Contacting affected families, rare diseases

affected families
Contacting affected families

KMSK Self-Help Group Switzerland on Facebook

The Support Association for Children with Rare Diseases offers a closed and protected support group on Facabook. While some of the members engage in lively exchanges, get their grief off their chest and make helpful information available to other affected families, others are silent readers. In any case, the support group helps families to see that they are not alone and to realize that a large network with a lot of knowledge is accessible. Join our group to become part of the network and the swarm of knowledge.

Click here to join our Facebook group

Looking for a family with the same diagnosis?

We maintain a list on our website of those diseases that are present in the children of our KMSK network. This list does not claim to be exhaustive and is constantly updated. If your child is affected by one of these diseases and you would like to exchange information, please contact us using the form below. We will inquire with the appropriate family to see if they are willing for an exchange.

Click here for our KMSK disease list

Please select the disease you would like to exchange from the list below:

Please include your name and email address so that we can contact you if we have any questions and, if necessary, forward your contact information to the affected family. And write a message to us in which you give us a little insight into your situation and about your affected child. We will be happy to contact you as soon as we have any news.
Join support group
The support group will replace the existing Facebook group.

Exchange with other affected persons

We would also like to refer you to the topic "Exchange with other affected persons", which we deal with on this knowledge platform. There we list further possibilities to get in contact with other affected families. These include memberships in networks, social media and analog self-help groups, as well as participation in information events and, for example, our family events. Browse through the possibilities and, if necessary, find a platform through which you would like to exchange ideas with other families.