Here is an introduction by Tobias:
“Six years ago, we learned that our son suffers from leukodystrophy. He will hardly develop physically skills as sitting, walking, speech etc. In the wake of this fate, we have started to get involved in the fight against rare diseases.
I am a molecular biologist and while my education is too far away from neurology to help my son directly, I try to build a bridge between research, medicine, and patients. I have started to deal with various leukodystrophies and other neurodegenerative diseases, compile patient information or attend congresses to provide digestible information to other patients. For four years I have been doing this as part of my involvement in the board of the German branch of the European Association against Leukodystrophies.
For me, the ERN offers an opportunity to improve both, network and medical care. However, this can only succeed if we as patients take an active role in it.”
Welcome, Tobias and we look forward to working together!