Germany

National Alliance
ACHSE e. V. Allianz Chronischer Seltener Erkrankungen
ACHSE e. V. Allianz Chronischer Seltener Erkrankungen
2016 events in Germany
Germany

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 2015 events spread across 18 cities in Germany. In Hamburg, a golf tournament fundraised for a rare disease summer camp. A conference in Magdeburg gave patients and doctors the chance to share their experiences in the field of rare disease, and a workshop in Berlin educated children about rare diseases.

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 rarediseaseday@eurordis.org.

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