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HIH News

“I want to do a unique job for those who have a rare disease”

The last day of February always marks Rare Disease Day, which bringsthe worries, hardships and hopes of people suffering from a so-called rare diseaseinto focus. A disease is considered rare if it affects at most one in every two thousand people. In Germany, there are about three million patients suffering from such a disease. “The patients have to cope with many burdens,” says Dr. Rebecca Schüle, “It is often a long way until there is a diagnosis, and there are hardly any therapies or medications for the majority of rare diseases—it is a constant hope and research.” The 43-year-old physician heads a research group at the HIH and leads together with Prof. Ludger Schöls, the head of the Center for Rare Diseases, the Special Outpatient Clinic for Spastic Spinal Paralysis. This is a rare neuropathic disorder that leads to spasticity and paralysis of the legs. In an interview with the Hertie Foundation, Schüle now reports on her work (interview in German only). 

 

Copyright: Ingo Rappers / Hertie-Institut für klinische Hirnforschung