Partnership of Rare Disease Patients is the focus of Rare Disease Day
Managing Director of Rare Diseases Foundation of Iran: This year the conference with slogan of “Partnership of Rare Disease Patients is the key factor for productive research on Rare Diseases” is a new chapter in collaborating with Rare Disease Patients to use their experiences in the research field.
Dr. Hamid Reza Edraki, emphasizing the presence of patients along with researchers and activists in the field of rare and genetic diseases, said: “The treatment of rare patients requires several factors, and if we limit ourselves to one factor, we will be in trouble in their treatment, sustenance and rehabilitation.
He added that the treatment of Rare Diseases is not limited to a specific organization, like Rare Diseases Foundation of Iran, but it involves the participation of all psychologists, metabolic and genetic physicians, and all professionals working in the field of rehabilitation of patients, and everyone should go hand in hand to prevent and treat these diseases more quickly.
Rare Disease Day is held every year on February 27th in 94 countries, and Rare Diseases Foundation of Iran will hold its 9th Annual Conference in Iranian Radio-Television Conference Hall in conjunction with other countries this year.
It is worth mentioning that this year’s conference will be held in the absence of the late. Dr. Ali Davoudian, the founder of Rare Diseases Foundation of Iran. He passed away on the eve of the ninth anniversary of the establishing the foundation due to a heart attack.
Dr. Hamid Reza Edraki, the new Managing Director of the Foundation, said: “The absence of Dr. Davoudian will be an irrecoverable accident for the foundation, and my colleagues and I will try to continue his way in order to help Rare Disease Patients”.
