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
www.achse-online.de

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

www.portal-se.de

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
www.patienten-informationen.de

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

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

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
https://www.proraris.ch

Fundación Fontilles - Organisation for information and help with Leprosy
https://fundacionfontilles.org/

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.

 


 

 

 

 


 

 

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