a project of the German Society of Anesthesiology and Intensive Care Medicine


Patient Organisations

Here are links to informations, patient organisations and self-help groups:


ACHSE - Allianz Chronischer Seltener Erkrankungen e.V

ZIPSE - Zentrales Informationsportal über seltene Erkrankungen -
German database on rare dieseases and patient organisations in Germany


Patienten-Informationen vom Ärztlichen Zentrum für Qualität in der Medizin (ÄZQ) -
Patient Information from the Medical Center for Quality in Medicine,
by the Association of Statutory Health Insurance Physicians

Deutsche Gesellschaft für Muskelkranke e.V.
German Society for muscle diseases

LEONA – Familienselbsthilfe bei seltenen Chromosomenveränderungen e.V.
Support group for parents of children with all kinds of rare chromosome disorders

EURORDIS - European non-profit alliance of 851 rare disease patient organisations
GARD - Genetic and Rare Diseases Information Center, funded by two of the National Institutes of Health (NIH) organisations of the USA: National Center for Advancing Translational Sciences (NCATS) and the National Human Genome Research Institute (NHGRI)
Aplastische Anämie & PNH e.V. - German Patient Organisation to enhance research and information for patients

ProRaris - Alliance of rare diseases - Umbrella organisation of Swiss rare disease patients’ organisations

Fundación Fontilles - Organisation for information and help with Leprosy







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