So far, 350 EB (Epidermolysis bullosa) patients have registered at the specialized health house for the group, said Seyyed Hamid Reza Hashemi Golpayegani, head of EB group at the Iranian Rare Disease Foundation (RADOIR). “The number is estimated to reach 500 by the end of the current Iranian year (March 20),” he said, IRNA reported.
Following a directive from Health Minister Hassan Hashemi, the specialized health house officially opened in June 2015, in cooperation with the IRDF and the Mostazafan Foundation (a charity for the oppressed and disabled), to provide free medical services for EB patients. It is managed by the Iran University of Medical Sciences.
“Special dressing materials, medicines, diagnosis, control, prognosis, and referrals to more specialized clinics free of charge are among the services offered.”
EB is a group of inherited connective tissue diseases that cause blisters in the skin and mucosal membranes. The prevalence rate was estimated to be approximately 8 per million and the incidence 19 per million live births globally.
