RADOIR 10th Rare Disease Day with the theme, “Rare but Not Alone!” was held in March 2nd, 2019 at International Razi Conference Center (IRCC).
RADOIR NEWS- Some of the RADOIR’s achievements such as holding medical committee sessions & launching SABNA patient registry system, introducing rare diseases Atlas as a fundamental reference for all professionals and the scientific collaboration MOU with Iran University of Medical Sciences (IUMS), Tehran University of Medical Sciences (TUMS), National Brain Mapping Laboratory (NBML) and ROYAN Institute were mentioned by Dr. Hamid Reza Edraki, RADOIR Managing Director.
In the following, Dr.Norouzi, RADOIR Deputy of scientific research, appreciated all the students and professors helped for unveiling the Iran Rare Diseases Atlas and emphasized, “This Atlas will be a significant resource for the researches and professionals working on rare diseases and genetic disorders. In addition, I invite other researchers to involve with rare diseases.”
Mehdi Shadnoush, Manager of diseases affairs at Ministry of Health noted, “All the governmental organizations and NGOs should have an effective interaction in national strategic plan complication.”
Furthermore, E.Sadeqi Far, Deputy Cultural & Social Ministry of Cooperatives, explained, “All the society members, Governmental organizations and NGOs are responsible for the rare patients and their lives. In addition, traditions pushing us toward the social solidarity and modernism.”
He added, “About 200 million people are living with disabilities all around the world and many societies are discussing about their problems.” “I appreciate all the organizations and individuals helping to promote the life quality of rare patients and believe that raising the public awareness about rare diseases as well as supporting rare patients are the most significant and valuable achievements of RADOIR.” Mohseni Bandpey, Tehran Governor. “80% of rare diseases are caused by genetic mutations and 30% of rare children are suffering from early death.” He noted.
In addition, Ali Rabiee, the Former Minster of cooperative Labor & Social Welfare explained, “Society plays an essential role in promoting rare patients well-being and happiness.”
At the end, all the authorities and managers of rare diseases societies were appreciated and SinaGene Pharmaceutical Company was awarded as the only company which imports orphan drugs.