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.

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 license for psychological and counseling center for rare diseases patients has been issued recently.

The Psychological and Counseling Organization of the Islamic Republic of Iran (PCO) issued a license for the establishment of a psychological and counseling center for Rare Diseases Foundation of Iran.

Members of the Scientific Deputy of Rare Diseases Foundation of Iran were determined.

Members of the scientific deputy have been determined in order to reach scientific, educational, preventive and therapeutic goals because of Rare Diseases Patients.

The college of the Rare Diseases Foundation of Iran is going to start its activities since October.

Getting started the establishment of another branch for Rare Diseases Foundation of Iran in Golestan Province

During his trip to Golestan, Dr. Ali Davoudian has visited the head of Medical Sciences University and negotiated in order to establish a branch for Rare Diseases Foundation of Iran in Golestan province.

Reading the script of “Mermaid Story” by the aim of sympathy and companionship with Rare Disease Patients. It will be performed by artists, Rare Diseases Foundation of Iran’s ambassadors, in “Gholhak Cinema Complex” on Sunday at 17:00.

“ Tabibe Man” the Health Club has opened since June 27^th  in “Tochal” tourism and recreational region in Tehran. The club has been launched in partnership with Rare Diseases Foundation of Iran, “Aramesh” Clinic, ”Parsian“ Medical & Imaging Center, “Tabibe Man” Media Base, Tehran Emergency Center and “Tochal “ sport, recreational and cultural complex.

Dr. Ali Davoudian has registered Iranian advocacy community for Rare Diseases Patient in Liechtenstein in line with the goals of Rare Diseases Foundation of Iran.

Organization of the first meeting between the Iranian rare diseases societies and Director General for NGOs of the Ministry of Health and Medical Education of the I.R. Iran on July 2nd 2017 with the purpose of discussing pharmaceutical, economic and social problems facing rare disease patients.