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.
Description of the project
Healthcare is an important part of human life. Providing the best medical facilities for people with rare diseases is an integral part of today’s society. Thus, RADOIR designed an automatic system for Patients’ registry. The main goal is to establish an integrated system without paper works and with access to all sections; medical services, research and development, pharmaceutical, associations and other affiliated centers to provide better services for rare patients.
A joint meeting between Rare Diseases Foundation of Iran, Optical research center of Medical Science of Shahid Beheshti and the Institute for supporting patients with RP held on Thursday 24th Oct. 2018 in regard with RP patients’ registration in SABNA.
ICORD is an International Society for all individuals actively involved in rare diseases and/or orphan drugs, including health care, research, academic, industry, patient organisations, regulatory authorities, health authorities, and public policy professionals. The mission of ICORD is to improve the welfare of patients with rare diseases and their families world-wide through better knowledge, research, care, information, education and awareness. One of the main activities of ICORD is the organisation of the ICORD annual meetings, which have been successfully arranged ten times all over the world.