Rare Disease Day in Germany
In Germany, Rare Disease Day was first celebrated in 2009. The day has garnered support from Mr. Hermann Gröhe, 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, fosters researchers and health care professionals for their brilliant work for patients with Rare Diseases.
In 2016, 18 cities hosted events in Germany, a great number being all-day conferences that addressed topics such as research centres and Orphanet. Rostock was also home to an ice-skating event where 1 euro was donated for every kilometre skated.
The German Alliance ACHSE, Allianz Chronischer Seltener Erkrankungen (ACHSE e. V.), has a network of 120 rare disease patient organizations ACHSE advocates for better treatment and care, acting as the voice for the more than four million people in Germany living with a rare disease. They also help patients connect with local organisations which may have more information about a specific rare disease or disorder. Find their contact information at the bottom of this page.
Germany has approved a National Plan which implements better structure for improved understanding, diagnosis, and care in the field of rare diseases.
You can also get involved! Do you know of any events not listed here? Email us at [email protected]