Welcome to the website of the National Register for Rare Diseases (NARSE)!
To date, there is no reliable data on how many people in Germany are affected by rare diseases or which specific rare diseases they have. This makes it difficult to develop reliable treatments and new therapies. After all, effective action can only be taken when the prevalence and distribution of diseases are known. The National Registry for Rare Diseases (NARSE) intends to close this gap.
NARSE …
• increases knowledge about the prevalence and distribution of rare diseases in Germany
• gives those affected a voice and facilitates networking among them
• improves access to information and (new) therapies
• enables treating physicians to enter patient data with the patients’ consent
• secures the data in accordance with applicable data protection regulations
As a physician, register now and help us — because every data entry is valuable!
As a person affected by a rare disease, ask your physicians to participate! We also plan to enable patients to enter their own data in the future.
Click here to register as a physician.