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
 
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
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.

Netzwerk Neuroendokrine Tumoren e.V.
Patient organisation for people affected of neuroendocrine tumours
www.netzwerk-net.de

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

The Ultra Rare Disease Disorders And Disabilities Foundation, Northern Ireland
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
https://sjaeldnediagnoser.dk/rare-diseases/

Myelitis e.V. - German unit of the international Rare Neuroimmune Association (SRNA)
https://www.myelitis.de

ALS-Hilfe Bayern - German regional patient organisation for ALS
https://als-hilfe-bayern.de/

International Alliance of ALS/MND Associations
https://www.als-mnd.org