C.S.M.R   Centro Servizi Malattie Rare

The arise of the C.S.M.R. - Centro Servizi Malattie 

 
The aim is to make the CSMR a valuable social activity and a concrete point of reference to people affected by rare diseases and their families. This information point, both on-line and in an office situated in a rural area easily reachable, will offer and answer to all questions, often unresolved, thanks to the international network. The first desk accessible,sustainable and multifunctional offering hints and certified information to safeguard the person with the target to increase their self-esteem and autonomy. It will grant a confrontation with the Italians and the Europeans healthcare institutions, public and private authorities pointing out the values of the public health and the social emergencies of rare diseases. The CSMR will function by sharing information, promoting courses for people affected, the family and also for professional operators; collaborating with centers of expertise, with the international situation in view of the next Presidency.