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National Registry for Rare Diseases

– more visibility for the rare ones

To date, there is no reliable data on how many people in Germany are affected by rare diseases. Yet only by knowing the frequency and prevalence of diseases can effective action be taken. The National Register for Rare Diseases (NARSE) aims to finally close this gap.

Rare are plenty – but how many?

Some diseases are so rare that there are only a handful of sufferers in Germany or even worldwide. As these diseases are often underdiagnosed and virtually unexplored, it is difficult for those affected and their relatives to communicate with each other. In addition, the lack of reliable epidemiological data makes it extremely difficult to develop evidence-based treatments or new therapies. The National Register for Rare Diseases (NARSE) is the first cross-disease register to provide a comprehensive overview of patients with SE living in Germany.

To this end, the NARSE:

  • the consent-based entry of patient data by treating physicians
  • locating and networking those affected in order to simplify access to information and new therapies
  • entries in the NARSE register by patients themselves or by self-help organizations
  • the exchange of data at European and international level
  • the collection of data in accordance with the applicable data protection regulations.

In the current pilot phase, NARSE is initially recording ultra-rare diseases (< 1 : 50,000) for which therapy development may already be possible in the foreseeable future. In cooperation with the Centers for Rare Diseases and research initiatives, NARSE should be able to record the basic data of all rare diseases in the future. In this way, NARSE will create an important basis for effective research efforts and new evidence-based treatment methods.

In the accompanying evaluation project FAIR4Rare, funded by the G-BA’s Innovation Fund, project partners from healthcare research, clinics, registry operators and self-help organizations are examining the extent to which NARSE is accepted by users and what further developments are necessary to establish it in such a way that patients with rare diseases are able to participate more fairly in our healthcare system.

Did you know, that...

... one speaks of ultra-rare diseases from a prevalence of < 1:50,000?

Register now!

Help us and register now as a registering doctor or, if you are affected, talk to your doctors about participating. Every data set is valuable!

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