Many patients and their families contact the care-for-rare foundation to ask for help and support. We are aware of the distress associated with rare diseases. We would like to assist you. In conjunction with an international network of experts in hematology and immunlogy, our own expertise is currently limited to diseases of the blood and immune system. We refer questions with respect to diseases of other organ systems to other experts.

“ACHSE” is the German working party of patients with chronic rare diseases, and “ORPHANET” offers a web-based encyclopedia of rare genetic diseases in many languages. On a European level, “EURORDIS” is the association of patient organisations for rare diseases. All organisations offer informative websites. The German Ministry of Research and Education lists collaborative research grants implemented to advance clinical research on rare diseases (www.bmbf.de).