How can I find self-help groups and information centers?
In Germany, in addition to doctor's offices and hospitals, there is also a wide range of different services offering individual consultation and support if you are ill. There are many regional differences in how these services are organized, and they are not always easy to find. You can use the list below to help find and make use of local services.
Before starting any kind of treatment, each patient is entitled to receive detailed and easy-to-understand information about the advantages and disadvantages of the treatment as well as possible alternatives. In Germany, these rights are protected in laws covering patients’ rights.
Self-help groups are good places 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 are not directly affected by the disease. That can be a great relief. The basic idea of self-help groups is to share tips and experiences with others who are in the same situation.
Self-help 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, self-help groups are independent and represent only the interests of their members.
The following patient groups and self-help organizations have the status of legal patient representatives in Germany. Contact details are available at their websites:
- Deutscher Behindertenrat (DBR) – German Disability Council (in German)
- BundesArbeitsGemeinschaft der PatientInnenstellen (BAGP) – Federal Association of Patient Centers (in German)
- Deutsche Arbeitsgemeinschaft Selbsthilfegruppen e. V. – German Association of Self-Help Groups (in German)
- Verbraucherzentrale Bundesverband e. V. – Federation of German Consumer Organisations (in English and German)
The German-language website of the National Contact and Information Office for the Encouragement and Support of Self-Help Groups (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen, NAKOS) includes a database of self-help addresses. For questions about self-help groups, NAKOS can also be reached by phone at 030 / 31 01 89 60 (in German only).
Independent Patient Counselling Service Germany (UPD)
Independent Patient Counselling Service Germany (UPD) also serves as a central contact point for 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 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. The Federal Centre for Health Education also has a German-language database containing a number of different information center addresses.
Other information services
The following services also either offer information or can help you find local help centers:
- Health insurance funds
- Pension funds
- Health offices
- (Psycho) social information centers (the offices for health and social services can provide you with contacts)
- Patient information services offered by dentists
German Federal Government Commissioner for Patients’ Affairs
The German Federal Government introduced the office of Commissioner for Patients' Affairs in 2004. The holder of this office is charged with acting as an independent advisor to ensure that patient needs are taken into consideration in all relevant areas. You can visit the office in Berlin, call or send an email.
The following state governments of Germany have also introduced commissioners for patients' affairs:
IQWiG health information is written with the aim of helping
people understand the advantages and disadvantages of the main treatment options and health
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.