STXBP1 is a rare disease, which however is not recognized as such in Italy, because the list has not been updated by the Ministry, so some aid for families is not accessible. Less than 1000 people are affected in the world and in Italy there are just over 50. The affected person is often not self-sufficient and must rely on his or her family and this determines a substantial change in the management of parents' lives.Disability is not the consequence of illness but is the product of a society unprepared to welcome it. A truly inclusive society is one of the challenges of today's society.
