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

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.

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

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).

Independent Patient Counselling Service Germany (UPD)

Independent Patient Counselling Service 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. 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. It also has a database containing the addresses of advice and information addresses.

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.

IQWiG health information is written with the aim of helping people understand the advantages and disadvantages of the main treatment options and health care services.

Because IQWiG is a German institute, some of the information provided here is specific to the German health care system. The suitability of any of the described options in an individual case can be determined by talking to a doctor. informedhealth.org can provide support for talks with doctors and other medical professionals, but cannot replace them. We do not offer individual consultations.

Our information is based on the results of good-quality studies. It is written by a team of health care professionals, scientists and editors, and reviewed by external experts. You can find a detailed description of how our health information is produced and updated in our methods.

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Please note that we do not provide individual advice on matters of health. You can read about where to find help and support in Germany in our information “How can I find self-help groups and information centers?

Updated on September 20, 2021
Next planned update: 2024

Authors/Publishers:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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