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:

BASE Network - Bavarian Working Group for Rare Diseases

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

Association des patients France vascularités - French patient organisation for vascular diseases
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

Association pour le soutien à la recherche et aux personnes concernées par la Maladie de Kennedy (ARMK)    patient organisation for Kennedy disease
108 Boulevard Suchet, 75016 Paris, FRANCE - This email address is being protected from spambots. You need JavaScript enabled to view it.

Netzwerk Neuroendokrine Tumoren e.V.
Patient organisation for people affected of neuroendocrine tumours

Asociación de pacientes con síndrome de Persona Rígida (Stiff Person syndrome association)
Calle Sant Pere, 54, 08370-Calella (Barcelona, Spain); Phone +34 617 96 92 34; e-mail:  This email address is being protected from spambots. You need JavaScript enabled to view it.

Sjaelde Diagnoser - Rare Disease Denmark, national alliance of 56 rare disease societies

Myelitis e.V. - German unit of the international Rare Neuroimmune Association (SRNA)

ALS-Hilfe Bayern - German regional patient organisation for ALS

International Alliance of ALS/MND Associations

BHD Foundation

Genetic Alliance Australia







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