A General Strategic Review on Rare Diseases & Orphan Drugs

Joan Chambers

Senior Strategic Advisor      

Rare diseases are generally defined as diseases that affect fewer than 200,000 people in the United States. Because rare diseases touch so few people, pharmaceutical companies traditionally did not pursue drug treatment for them. In addition, only a few types of rare diseases are tracked in the United States. That makes it more difficult to know exactly how many rare diseases exist and how many people have them.¹ Treating these diseases has its own unique challenges, said Scott Schliebner, vice president of scientific affairs – rare diseases for PRA Health Sciences. Schliebner, considered an industry expert on this topic, is also a well-recognized speaker about rare diseases.

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.