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.
The 7th Scientific Conference of Hypothesis Diseases, Growth Hormone Disorder in children and Adults was held on 21 December 2018 by the scientific secretary, Dr. Mohammad Khamseh and the executive secretory, Dr. Mojtaba Malek from Endocrine and Metabolism Institute of Iran Medical Science University at Parsian Evin hotel, Kooh-e-Noor hall.
A Memorandum of Understanding has been countersigned between RADOIR and Medical Science Faculty of Tehran University for Research & Scientific collaboration
The first Joy “Campaign of RADOIR” with the slogan “Rare but not Alone!” held on 10th Dec, 2018 with the presence of some Comedians, storytellers, children’s favorite show men and clowns.
Scientific board of Rare Diseases Foundation of Iran joined 2018 Int’l Epigenetics & Epitranscriptomics Conference which was held during November 26-27 in Helsinki-Finland at which RADOIR was one of the main collaborators.
Calling for the 3rd International Peace Festival of little Storytellers; this time by inviting Rare Artist children
22 Nov – 02 Dec, 2018
Co-operation between the Rare Diseases Foundation of Iran and the ECO Cultural Institute in order to represent and discover the talents of the rare patients and enhance the spirit of peace and humanity in the ECO region.
Maryam, seven-year old child affected by Xeroderma Pigmentosum from one of the deprived village in Iran traveled 2000 km to Tehran, for lack of health and medical services. Her father says that the sign and symptoms of Xeroderma Pigmentosum have appeared on her skin since 2013. It’s about years he traveled between cities because of his daughter’s disease, since there isn’t any healthcare facilities in small villages and her condition is getting worse. These days her lips and eyes are affected too.
The first anniversary of Dr. Ali Davoudian, the father of Iranian rare patients coincides with the demise of Imam Reza in Aban 16th ( 30th October) in his birthplace (Bahnamir) with the presence of the country and provincial authorities; including Mr Govahi, representative of the supreme leader, Sardar Nanvakenari, chairman of the national security committee.