The 1st volume of “ Atlas of The Rare Diseases in Iran focused on the genetic and congenital diseases and disorders was published to share the knowledge and experiences by RADOIR’s experts and researchers with the world’s counterparts.
NORD has announced a day devoted to raising awareness about rare cancers
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.
MPS Genetic Map For The First Time In Iran
The head of transplant and treatment center of MOH-Iran announced,” There is possibility for accurate diagnosis of MPS patients population to receive further support from the government.”
4th Iranian Alopecia Society Conference Was held
The 4th Iranian Alopecia Society Conference was held on Friday 19th July, 2019 at Payam conference hall at the Ministry of Communications
The Second Session for The Iranian Strategic Plan For Rare Diseases & Orphan Drugs was held
On Wed. 17th July, 2019, the second session for the Iranian strategic plan was held at Tehran University of Medical Sciences (TUMS).
The Rare Artists of Miastenia Gravis Society at Mehr-e- Honar Gallery
A group of artist members from Miastenia Gravis society exhibited their paintings titled“Turquoise Flowers “ At Mehr-e-Honar Gallery.
The 1st NF Conference was held on 20 June 2019 At Tehran NGO Community Venue
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
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.
RADOIR Membership at International Society for Neonatal Screening (ISNS)
Rare Diseases Foundation of Iran was approved as associate member at the International Society for Neonatal Screening