The first NF Conference was held on last Thursday hosting NF patients and members, social and scientific patient supporters and advocates.
Dr. Jouybari (Mrs.), CEO at NF Society emphasized on the therapeutic problems and the high prevalence rates and treatment costs, prevention and control trending as well as self healthcare for the rare diseases patients. She also added, “ We hope for the possibility of finding appropriate therapeutic methods to cover certain treatment of Neurofibromatosis for the next 10 years .
During the event, Prof. D. Farhoud said while he got upset with the authorities did not participate, The father of Genetics in Iran presented his brief speech as : “The governmental authorities must join such rare diseases conferences and events. He indicated , : “ You, NF patient, are self- belief and confident people.”At the end of the ceremony, the patients advocates and those patients won the reciting poems and storytelling prize were all appreciated.