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
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
