National Registry for Rare Diseases (NARSE)

In close cooperation with the Eva Luise and Horst Köhler Foundation for People with Rare Diseases (ELHKS), with patient organizations such as ACHSE e.V., with the Centers for Rare Diseases and Alliance4Rare in German university medicine, with the Institute for Medical Informatics at the University of Frankfurt, and with the Independent Trust Office of the TU Dresden, the National Registry for Rare Diseases (NARSE) is being established step by step under the leadership of the BIH at Charité. 
The leading goal of NARSE is to offer people with rare diseases the opportunity to individually enroll in the registry, thereby contributing to the visibility of their disease collectively, but anonymously and in compliance with data protection laws.
Approaches to accelerate diagnosis, improve care, and enable new research approaches will be built on visibility - especially for people with ultra-rare diseases.

This is because some diseases are so rare that there are only a handful of people affected in Germany or even worldwide. Since these diseases are often underdiagnosed and virtually unresearched, the exchange among those affected and their relatives is difficult and the development of evidence-based treatments or new therapies for these patients is enormously hampered.