The important role of Parent Organisations to follow patients affected by Rare Diseases “I am not handicapped, i am special”

摘要

One day Daniele told me: “Dad, I’m not handicapped, ‘cause I’m not in a wheel chair, I see, I talk, I walk, I EAT, I have friends, I enjoy life and love this world…. It is true, I’m different, because I have something more you have not… I have Prader-Willi Syndrome, so …. I AM SPECIAL!”.