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
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


    Contact us:
   Get here a template for
   Consent publication case report


   For other languages of this template,
   contact us via e-mail.








  • Submit a recommendation
  • Suggest a reviewer or author
  • Call us rare diseases
  • Send us interesting material