In Germany, Rare Disease Day was first celebrated in 2009. The day has garnered support from Mr. Hermann Gröhe, former minister of health; Ms. Johanna Wanka, minister of research; and the former German First Lady Eva Luise Köhler. An annual award, the Eva Luise Köhler Research Award, recognises researchers and health care professionals for their brilliant work for patients with a rare disease. In previous years the day has been marked across Germany by a dance evening, workshops, symposiums and a nationwide photo competition.

Rare Disease Day 2020 again saw a wide variety of events across Germany, from Hannover to Ulm and Heidelberg. Lectures, panel discussions and workshops were held on a wide range of topics. Regional and local forums were held to exchange information and experiences on rare diseases. 

You can also get involved! Do you know of any events not listed here? Email us at [email protected].