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Rare diseases

and self-help

In the EU, a disease is considered rare if it affects no more than 5 in 100,000 people. However, there are a large number of people affected, as there are more than 6,000 rare diseases in total.

Those affected by an RD often cannot set up a classic regional self-help group because there are too few affected people in their region. The self-help office can also help with national networking and with setting up online group meetings.

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Information materials

Self-help groups for rare diseases and problems

The second way: nationwide search for people similarly affected and the formation of supra-regional exchange networks and self-help groups.


Break isolation, create connections, strengthen bonds

Which self-help groups or self-help organizations for rare diseases/problems exist in Germany? How can I find people or relatives who are similarly affected in Germany?



The “national contact and information point for the encouragement and support of self-help groups” maintains the so-called BLUE ADDRESSES for rare diseases and problems and supports the search for similarly affected people and self-help groups.




ACHSE is a network of self-help organizations. ACHSE acts as a mouthpiece, multiplier and mediator. It raises awareness of the concerns of people with rare diseases and their specific problems. It promotes knowledge about these diseases among the population, among stakeholders, but also among doctors and therapists.

To the page of ACHSE

More link tips

Official places and clubs

NAKOS is the nationwide self-help contact point and information point on the subject of self-help in Germany. The central tasks of NAKOS are:

  • NAKOS provides information about community self-help, for example by telephone, at events and on the Internet.
  • NAKOS provides referrals to local self-help contact points and nationwide self-help organizations and self-help initiatives using its databases.
  • NAKOS represents the fundamental interests of community self-help towards politics.
  • NAKOS carries out studies on community self-help.

To the NAKOS website