Spearheaded by the NORD Rare Cancer Coalition, which is comprised of 24 rare cancer-specific Member Organizations, Rare Cancer Day will be observed on October 1 to highlight the challenges people living with rare cancers face and to unify individuals living with rare cancers for awareness and early diagnosis.
On Wed. 17th July, 2019, the second session for the Iranian strategic plan was held at Tehran University of Medical Sciences (TUMS).
A group of artist members from Miastenia Gravis society exhibited their paintings titled“Turquoise Flowers “ At Mehr-e-Honar Gallery.
The first NF Conference was held on last Thursday hosting NF patients and members, social and scientific patient supporters and advocates.
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.
Rare Diseases Foundation of Iran was approved as associate member at the International Society for Neonatal Screening
RADOIR’s board of directors had a meeting session with Dr. Namaki, the minister of health on Monday April 15th, 2019 at MOH – Iran to present RADOIR’s 10 year activity report .