SUMMARY
The concept of rare disease (RD), according to the World Health Organization (WHO), is a disease that affects up to 65 people in every 100 thousand individuals, that means 1.3 for each 2 thousand people. In Brazil, it is estimated that 13 million people have rare diseases (RDs), most of them reaching children, more than half of whom are diagnosed late. RDs are usually chronic, progressive, debilitating, unhealing, with decreasing loss of autonomy by the patient, who faces along with his family prejudices and lack of hope in healing and in therapies.