Dr. HamidReza Edraki, a radiologist and the outstanding faculty member of Shahid Beheshti university, and Mr. Yaser Davoudian are appointed as the Managing Director and the Chairman of the Board of Directors for Rare Diseases Foundation of Iran.

Afer 40 days from abrupt death of Dr. Ali Davoudian, the founder of Rare Diseases Foundation of Iran,the Board of Trustees appointed Dr.HamidReza Edraki as the Managing Director and Mr. Yaser Davoudian as the Chairman of the Board of Directors.

 

The beginning of the preparation for joining Rare Diseases Foundation of Iran into the world community of Rare Disease Patients 

Finally, a dream of late Dr. Davoudian, the Founder and Managing Director of Rare Diseases Foundation of Iran comes true in order to improve the quality of life for patients with rare diseases and their families. Mr. Denis Costello, Web Communications Senior Manager & RareConnect Leader at Eurordis ( Rare Diseases Europe) traveled to Tehran on November 3^rd,  2017  for training technical experts from the foundation to launch the Rare Connect for Iranian patients in the very near future.

The funeral of Dr. Ali Davoudian, the Founder of Rare Diseases Foundation of Iran held on Monday 9:30 am.from Parsian Imaging and Medical center to the holy threshold of Imamzadeh Saleh.

Some of the famous artists and features participated in his funeral.

The Founder of Rare Diseases Foundation of Iran

Dr. Ali Davoudian, the Founder and Managing Director of Rare Diseases Foundation of Iran, was born on 28^th Jan 1959 in Bahnamir village located in Mazandaran province.

Dr. Ali Davoudian, the Managing Director of Rare Diseases Foundation of Iran passed away on the eve of the ninth year of the foundation’s activity.

The late Dr. Davoudian passed away because of heart failure at the age of 58. Dr. Davoudian established the Rare Diseases Foundation of Iran as a national and international institution in 1388 (2009). 

Due to the lack of any supporting organization dedicated to Rare Diseases Patients, Rare Diseases Foundation of Iran was formed by Dr. Davoudian’s effort and he had managed the foundation as a non-profit organization during these years.

Launching a pilot plan for RP (Retinitis Pigmentosa) Patients in the Western Region of the country with the help of Rare Diseases Foundation of Iran

The office of the Foundation for Rare Diseases in Kermanshah Province was inaugurated on Saturday, October  7, by the presence of the Managing Director of Rare Diseases Foundation of Iran and a delegation from the foundation, Head of Awqaf and Charity Affairs organization and a group of righteous from Kermanshah province.

“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.

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.