For more information, you can find the following links
Federal Association of Congenital Vascular Malformations e.V. (Bundesverband Angeborene Gefäßfehlbildungen e.V.)
an association of patients, relatives, doctors and interested parties. Germanys larges patient support group in this field. Goals are exchange of experiences, information and education of patients and doctors. Networking between stakeholders and supporting research are other goals.
Federal Association of Congenital Vascular Malformations e.V., Blötter Weg 85, 45478 Mülheim an der Ruhr. Tel .: 0208-3099399-0, Mail: email@example.com
Alliance of Chronic Rare Diseases (Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V.)
Founded in 2004, it brings together more than 120 support groups.
The ACHSE is a strong network for the "rare diseases", consisting of sufferers, friends, sponsors, doctors and health care consultants.
ACHSE e.V., c/o DRK Kliniken Berlin-Mitte,
Drontheimer Straße 39,
Tel.: 030 33007080
Central Information Portal on Rare Diseases (Zentrales Informationsportal über Seltene Erkrankungen (ZIPSE)
a project funded by the Federal Ministry of Health and part of the National Action Plan for People with Rare Diseases (NAMSE). The aim is to disseminate quality-assured information on rare diseases. ZIPSE itself does not create any information, but refers to existing information providers.
National Action League for People with Rare Diseases (Nationales Aktionsbündnis für Menschen mit Seltenen Erkrankungen (NAMSE)
The NAMSE is coordinated by the Federal Ministry of Health (BMG), the Federal Ministry of Education and Research (BMBF) and the ACHSE.