The head of Iranian Rare Diseases Foundation has announced the establishment of a specific association for the rare disease neurofibromatosis in the country. “Given the increasing number of people suffering from this rare malady in the country, and the extremely high treatment costs as well as its social, physical, occupational, and psychological implications, the association is necessary to provide a comprehensive database on their status,” said Ali Davoodian, ISNA reported. The association will provide the patients with “rare disease cards” that allows them to use diagnostic and treatment services free of charge. Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves. It is usually diagnosed in childhood or early adulthood.
