Research for Rare - Research for rare diseases


Registries and biobanks are indispensable for research into rare diseases. They can provide new knowledge to researchers and thus be of direct benefit to the patients. Well-maintained registries can serve as an information platform for the registered patient.

An overview of the biobanks in Germany was developed by the TMF e.V. under

The following list on German registries has been supported by Orphanet Germany. For further information, please see

German Registries for Rare Diseases