In brief: How can I find support groups and information centers in Germany?

Publication Details

In Germany, in addition to doctor's offices and hospitals, there is also a wide range of different services offering individual advice and support if you are ill. There are many regional differences in how these services are organized, and they're not always easy to find. You can use the list below to help find and make use of local services.

Patients' rights

Before starting any kind of treatment, each patient is entitled to receive detailed and easy-to-understand information about the pros and cons of the treatment as well as possible alternatives. In Germany, these rights are protected in laws covering patients’ rights.

Support groups

Support groups are a good way to meet other people who know about the symptoms, feelings and practical problems associated with a particular disease or illness from personal experience. They can help make people feel comfortable discussing topics that may be difficult to talk about with people who aren't directly affected by the disease. That can be a great relief. The basic idea of support groups is to share tips and experiences with others who are in the same situation.

Support organizations also offer much more, such as sports programs, events and brochures on various topics. They can also help with matters of social law and act as your public health representative in matters of social and health policy. Ideally, support groups should be independent and represent only the interests of their members.

How can I find a support group?

The German-language website of the National Contact and Information Office for the Promotion of Support Groups (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen, NAKOS) includes a database of support addresses. For questions about support groups, NAKOS can also be reached by phone at 030 / 31 01 89 60 (in Germany).

Your regional health office or insurer can also point you towards support groups near to where you live. They can also be contacted by phone or email. Your family doctor may have addresses or tips as well.

You could also try searching the web by entering “support group” and your disease and city or region as keywords. For example: “support group” “breast cancer” and “Munich.” It is important to review the results with a critical eye because there could be some dubious results with the heading “support group.”

The following patient groups and support organizations have the status of legal patient representatives in Germany. You can also find further information and useful places to contact on the websites of these organizations:

Independent Patient Advice Service for Germany (UPD)

Independent Patient Advice Service for Germany (UPD) serves as a central point of contact offering patient services. This organization also provides advice concerning social law issues free of charge. You can reach the organization by sending them an email or calling them. Online services are also available. Their website (in German, Turkish and Russian only) has a directory of local advice and information centers.

The Federal Centre for Health Education (BZgA)

The Federal Centre for Health Education (BZgA) offers both web-based information and anonymous consultation over the telephone on a number of different topics.

Was hab´ ich? (What do I have?)

Patients can submit their German-language medical reports and findings to the website "Was hab’ ich?" (What do I have?). Medical students and doctors then "translate" the documents into simpler wording without complicated medical terms. This is a free service, provided by volunteers.

Consumer protection centers

Germany's different federal states each have consumer protection centers that offer advice based on your individual situation. The various state consumer protection centers may have their own areas of focus, such as individual health care services (IGeL: individuelle Gesundheitsleistungen) or dentistry.

Other information services

The following places also either offer information or can help you find support locally:

Federal commissioner for patients’ affairs

The German federal commissioner for patient's affairs (Patientenbeauftragte) is an independent advisor whose job it is to ensure that patient needs are taken into consideration in all relevant areas of society. Their office is based in Berlin.

The following state governments of Germany also have their own commissioners for patients' affairs:

ThemenCheck Medizin

The general public can ask questions about medical research on the platform “ThemenCheck Medizin" offered by the Institute for Quality and Efficiency in Health Care (IQWiG), Germany). It is only available in German. Scientific experts then analyze the available data on selected topics. The results are taken into consideration when making future decisions concerning health care services.