The first session for developing strategic plan for rare diseases of Iran was held at TUMS headquarters office on last Sunday 16th June, 2019 with the presence of Dr. M.A. Sahraiean the scientific research deputy of TUMS, , Dr. Mahdi Norouzi, the scientific research deputy of RADOIR, Dr. Shamshiri, Epidemologist, Dr. Shadab Salehpour, pediatric endocrinologist, Prof. D. Farhoud, the father of genetic science of Iranand Dr. Siyamak Abdi, neurologist and Dr. H. R. Edraki, RADOIR managing director who is the core member to develop the national strategic plan for rare diseases in Iran.
Dr. Edraki explained about the activity record of RADOIR and emphasized on developing the national strategic plan through the legal and scientific pathways to highly promote RADOIR mission and vision for finding the best solutions to assist the rare patients with their disease and life style obstacles and problems.
The scientific research deputy of TUMS declared,” The National Strategic Plan for Rare Diseases sounds like ID card and any country refers to its national strategic plan as reference to cover the rare patients with any service they may need, accordingly. Though on and on follow ups by RADOIR’s executives and receiving the endorsement from MOH – Iran, TUMS is responsible to develop the national plan.
At the end of the session , Dr. Norouzi finalized,” In the first phase, we have to define rare disease, its mission and vision, guidelines, significant frameworks in its broader sense and then there must be committees and trials groups in its narrower sense. “
To be mentioned that the sessions will be held once in a week at TUMS headquarters office.