“We entered international arena with the slogan of “Rare Disease Patient without Border” to communicate developed research organizations and large pharmaceutical companies, in order to convince their presidents to cooperate in transferring medicine and treatment for Rare Disease Patients.” Says Dr. Davoudian.

Dr. Ali Davoudian accompanied by scientific representatives from Rare Diseases Foundation of Iran participated at 25th Eurordis Round Table Companies workshop which had held on 26th of September 2017, in Barcelona.

 Dr. Ali Davoudian, the Managing Director of the Rare Diseases Foundation of Iran, met other countries’ Patient Organizations leaders at the 12^th annual ICORD Conference and 6^th China Rare Disease Summit held in Beijing, on 7^th Sep 2017.

The 12th Annual ICORD Conference and the 6th China Rare Disease Summit was held in Beijing, China, on September 7~10, 2017, which is organized by the International Conference on Rare Disease and Orphan Drugs (ICORD), Chinese Organization for Rare Disorders (CORD) and Peking Union Medical College Hospital (PUMCH).

A delegation from Rare Diseases Foundation of Iran, accompanied by Dr. Ali Davoudian, participated at the event in order to meet other patient societies and organizations’ leaders, and also to visit pharmaceutical companies and medical equipment factories.

Narges was born with a congenital disorder, her spine and neck vertebrae had been sticking.

At first, there was just a limitation in moving her neck, it means she couldn’t move her head up or down and left or right. When she grows up, her waist gets the curved shape and it gradually gets worse.

The 8th International Rare Disease Day conference on February 26 with the slogan “Rare Disorders Without Borders,” aims to raise awareness on rare diseases across the world, and the medical and social challenges in the field.

Annually, more than 30,000 babies with congenital disorders are born in the country while in at least 20,000 cases the problem can be prevented or solved through premarital and prenatal genetic counseling, said Dr Saeed Reza Ghaffari, genetic expert and a board member of Avicenna Infertility Research and Treatment Center.

As a member of the EURORDIS delegation, I was invited to participate in the Rare Disease Foundation of Iran’s 8th International Congress on the occasion of Rare Disease Day.