RADOIR NEWS- Ichthyosis, NF, Alopecia, Mucopolysaccharides, Halorverden, EB, SMA, RP, Leprosy, Rett Syndrome, Cystinosis and PKU patient joined the session to share their ideas honoring the 10th Rare Disease Day on Saturday March 2nd ,2019 .
Dr. Hamid Reza Edraki, RADOIR managing Director emphasized, “All the rare patient societies are trying to achieve the united approaches; therefore it is necessary to have monthly meeting sessions to further focus on RD patients needs and discuss about their problems.”
In addition, Dr.Yaser Davoudian, RADOIR Chairman explained about RADOIR’s national and international recent achievements . Furthermore, he noted that effective policies have been made for their better access to orphan drugs, control and treatment in the upcoming next 6 months. The 10th congress in the occasion of Rare Disease Day, by the presence of ministers, MPs, social and healthcare authorities, athletes, artists and rare patients advocates will be held on Saturday March 2nd , 2019 at 4:00 – 8:00 pm.
Moreover, the rare disease Day scientific seminar as an outstanding approach to rare diseases, will be held at Razi International Conference Center with the attendance of the Iranian medical professors, scientific healthcare authorities at 2:00-6:00 pm.
