The "Rete Malattie Rare"-onlus (RMR) association was founded in 2004 by a group of patients affected by Rare Diseases and their families to help other patients and families with the same problems related to their pathology.
Our association has immediately tried to be, through the tools offered by the Internet, a point of reference for many rare patients and families without a specific association, trying to create a network of solidarity between them. RMR has always stimulated and stimulates the formation of self-help groups and the creation of new associations.
RMR provides its contact search services, to support patients in the search for qualified information, and centers of experience for diagnosis and treatment. The association's website collects and disseminates reports on Rare Disease. Through its Facebook group, it seeks to circulate information and leave people with very rare diseases out of isolation.
RMR carries out activities for the promotion of Rare Diseases network in Italian regions. RMR has promoted Associative Networks in regional territories that have undertaken training and promotion of the needs of rare patients in regional institutions such as the "A.Ma.Re. Puglia" network and the Campano Forum of associations for Rare Diseases.