Photo ©Felix Fiedler/ NeuroCure
Video about Rare meets Care (in German)
Myastenia gravis is a rare disease that is often diagnosed late. This autoimmune disease causes exercise-dependent muscle weakness, which can lead to life-threatening episodes and repeated intensive care unit (ICU) visits.
MyaLink is a platform that aims to improve the quality of treatment via enabling the access to specialists and digital symptom tracking.
At their presentation within BERLIN BRAINS, the team depicts the problems of myastenia gravis patients and shows how digital health technologies (MyaLink) can improve care for people with rare diseases.
Dr. Maike Stein, who treats patients every day in the myasthenia clinic at the Charité reports on the event:
"The lecture at BERLIN BRAINS was a great experience for us. The whole evening, as well as the preparation, was a great pleasure. It is also a challenge to present your own project and the idea behind it to an audience from outside the field. In the lively discussion that followed, we learned to look at our own topic from a new perspective.