Self-help group

Affected families are not alone with their problems. In our closed Facebook group, we connect affected families with each other. We offer them a closed platform to share their experiences. Because although the clinical pictures and diagnoses of children with rare diseases are very different, there are many issues that concern all those affected. For example, the financial and legal struggle for support contributions, integration into school or questions about new therapies. Our self-help group on Facebook is the right place for any questions about dealing with rare diseases.

KMSK self-help group on Facebook

Only parents of children with rare diseases are accepted into the KMSK Self-Help Group Switzerland. There are currently 795 affected families.