SELFCARE magazine
Rare diseases
Living with rare diseases - information and inspiration
In our annual KMSK magazine SELFCARE Rare Diseases, we publish exciting interviews with affected families as well as articles by specialists. Results from our own studies with our 860 families are also published. The magazine is published on a specific focus topic and presents the entire range of services offered by the support association. It is sent to all members by post and also serves as a tool for acquiring potential patrons.
Since the beginning, we have pursued a clear strategy - supporting families financially, connecting families and promoting the transfer of knowledge. The continuous development of these three focus topics is only possible thanks to the close exchange with our KMSK families and specialists. Projects such as the KMSK magazine SELFCARE Rare Diseases, the six KMSK knowledge books on rare diseases, the KMSK knowledge platform and the KMSK Knowledge Forum on Rare Diseases have arisen from the specific needs of affected families. The aim is to enable as many people as possible to benefit personally or professionally from them.
We would like to express our sincere thanks to the affected parents, specialists, patrons and donors for their trust!
Click here to order free of charge
KMSK Magazine SELFCARE Rare Diseases N°02 - the difficult path before and after diagnosis
In spring 2024, we learned of three families who were inadequately diagnosed with a rare disease for their child. Receiving such drastic news without any empathy and the necessary support was more than unexpected! For this reason, we decided to dedicate the second issue of our KMSK magazine SELFCARE to the emotional rollercoaster ride before and after a rare disease diagnosis. In addition, we conducted an online survey of 120 of our families to find out how they experienced this journey and where there is still room for improvement. Read testimonials from affected families and expert articles on the topic.
KMSK Magazine SELFCARE Rare Diseases N°01 - 10th Anniversary
The first KMSK magazine SELFCARE is intended to give our dialog groups an in-depth insight into our challenging work. We also want to show how affected families, doctors, employees and patrons get involved in new projects for the support association for children with rare diseases and how they perceive the collaboration.
Download Magazine N° 01