Twelve patients associations 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".