Rare diseases

Patient associations

Patients associations represent an important resource for the patient community, expecially in the field of rare disease. They offer support to sick persons and their families, by sharing experiences and good practices, and help in bridging a number of specific information gaps, starting from a common denominator.

Patient associations promote the self-awareness and self-determination, essential features for rare diseases; furthermore, they offer a knowledge and experience base, different and complementary to the medical and/or institutional one, useful to stimulate scientific research, actions and socio-sanitary interventions