Rare Diseases Foundation of Iran and ROYAN Institute held a meeting session on the means of scientific research collaboration in the field of rare diseases and genetic disorders on Wednesday 2nd Jan, 2019.
RADOIR NEWS- On the Wednesday 2nd Jan, 2019, Dr.P.Afsharian, Deputy Research & Development and Dr.E.Amirchakhmaghi, Director of Project Tracking & Assessment Office of ROYAN Institute joined the meeting session with Dr.H.R.Edraki, Managing Director & Dr.M.Norouzi, Deputy Research & Development at Rare Diseases Foundation of Iran for further negotiation on mutual substantial research progress to begin their collaboration.
‘’Almost %85 of rare diseases are caused by genetic mutations. Due to the ROYAN Institute achievements, we are able to have efficient access to genetic risk factors’’, Dr.Edraki noted. Also Dr.Norouzi, the Deputy Research & development of RADOIR explained,’’ Rare Diseases Foundation of Iran as a non-profit organization has achieved outstanding success on supporting services for rare patients with no borders and limitations.
Considering about 300 rare diseases have been registered and identified in SABNA- patient registry system at RADOIR which is quite applied and useful for the prevention processing of the rare genetic diseases and disorders, especially.
The Deputy Research & Development of ROYAN Institute, Dr.Afsharian added,‘’They are interested in developing research priorities on rare diseases diagnosis control, treatment and prevention. She also mentioned that the therapeutic measurements are very costly as well as time consuming; therefore it is better to firstly perform the necessary actions for raising public awareness.’’