Organisation

Parent Project aps City: Phone :

Parent Project aps is the association of patients and parents with children affected by Duchenne and Becker muscular dystrophy (DMD/BMD).

We have been working since 1996 to improve the treatment, quality of life and long-term prospects of our patients through research, advocacy, education, training and awareness.

Families are the heart of our association: Parent Project was born from the initiative of a group of parents who decided to join forces to guarantee their children the best opportunities and to support each other, creating a network that today includes about 20,000 people between families, volunteers, clinicians, researchers, supporters. Since 2008 Parent Project has been running the Italian DMD/BMD Registry, collecting demographic, genetic and clinical information about patients with DMD/BMD, necessary for the recruitment of patients for clinical trials, but also to improve the epidemiological information about these pathologies.

Parent Project also operates in the direction of family support through psychological and social counselling, offered in most Italian regions