Foto von Ivonne Müller mit Tochter Ann-Christin

NARSE

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?

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!

Frequently Asked Questions (FAQ)

NARSE was launched as an initiative of the members of the ELHKS Think Tank for Rare Diseases with start-up funding from the Eva Luise and Horst Köhler Foundation.

The registry was implemented together with the Berlin Institute of Health at Charité and the Institute for Medical Informatics at Goethe University Frankfurt. The Berlin Institute of Health at Charité – Universitätsmedizin Berlin has been the operator since its launch in October 2023.
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 order to enable patients with rare diseases to participate more fairly in our healthcare system.

Latest News

Events

Breaking Boundaries Together: Review of the 10th Rare Disease Symposium

27.04.2026

Under the motto “Breaking Boundaries: Uniting People, Knowledge and Systems in Rare Diseases,” the 10th Rare Disease Symposium of the Eva Luise and Horst Köhler Foundation brought together international experts…
Events

10th Rare Disease Symposium – Session 1: Case Study Rare Obesity

27.04.2026

The first session of the Rare Disease Symposium on April 17, 2026, used the case study of genetic obesity to vividly show how closely personal experiences, biological mechanisms, and therapeutic…
Events

10th Rare Disease Symposium – Session 2: Collaboration Beyond Borders

27.04.2026

The second session of the Rare Disease Symposium on April 17, 2026, focused on how international collaboration and structured data use can advance the diagnosis and research of rare diseases.