Research for Rare - Research for rare diseases


The maintenance of registries and biobanks is indispensable for research into rare diseases. These tools are not only of use for the research scientists supplying them with new knowledge, but can also 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