Duchenne Parent Project ONLUS

Parent Project Onlus is a nonprofit patient's organization focused on Duchenne and Becker Muscular Dystrophy (DMD/BMD), based in ltaly since 1996 and one of the co-founders of UPPMD. The mission of the organization is to improve treatment and the quality of life for individuals affected by Duchenne through research, advocacy, education and to support patients and their families. 
Since 2007 Parent Project has been running the ltalian DMD/BMD Registry, by collecting demographic, genetic and clinica! information regarding patients with muscular dystrophy. The Registry is fundamental to the recruitment of patients for clinica! trials, and it is also a great tool for the Duchenne Community, to improve our knowledge on the natural history and epidemiologica! information on DMD/BMD. Parent Project also supports patients and their families through psychological and social counseling, as well as providing information regarding research advances and organizing conferences specifically directed to families and their needs. 
More info at www.parentproject.it