Eighteen patient organisations are an integral part of the FIMATHO network. They ensure the link between patients and health care professionals. Most of them are also members of the collective Alliance Maladies Rares.
The associations in the network meet every two months: this time for discussion and sharing helps launch cross-functional projects within the network (information kits provided to parents at birth, set-up of information days regarding oral feeding difficulties, transition from adolescence to adulthood, etc.). The representative from the associations sits on the management committee.
The associations AFAO, APEHDIA and La Vie par un Fil are members of the European rare disease network "ERNICA".
Afa Crohn RCH organisation
Association Française de l'Astrésie de l'Œsophage (French Organisation on Oesophageal Atresia)
Association Francophone de la Maladie de Hirschsprung (Francophone Hirschsprung's disease organisation)
Francophone Organisation for Major Genetic Hypertriglyceridaemia (AHFyMaGe)
Association for Hereditary Chronic Pancreatitis (APCH)
Organisation for the Promotion of Research into Diaphragmatic Hernia (APEHDia)
Association Polyposes Familiales France (Familial Polyposis Organisation France)
Groupe MIAM-MIAM
La vie par un Fil
Organisation for Chronic Pseudo-Obstructive Bowel Disease
French Organisation for Congenital Saccharase and Isomaltase Deficiency
Organisation for Information on Eosinophilic Diseases
Les Hépat'ants - Organisation of parents of children with hepatocele
Syndrome de Cowden organisation
Vivre avec la gastroparésie organisation
Cure MVID (Microvillus Inclusion Disease) Organisation
LapaHEROSchisis organisation
