The FDA’s Center for Drug Evaluation and Research (CDER) released the annual report, “Advancing Health Through Innovation:

New Drug Therapy Approvals”, outlining new drugs approved for the first time.

The FDA’s Center for Drug Evaluation and Research (CDER) released the annual report, “Advancing Health Through Innovation:

New Drug Therapy Approvals”, outlining new drugs approved for the first time.

Included in the report were numerous approvals for treatments targeted at combatting rare diseases like cystic fibrosis, tenosynovial giant cell tumor, and sickle cell disease. Additional approvals were given to assist patients with erythropoietic protoporphyria, neuromyelitis optica spectrum disorder, systemic sclerosis-associated interstitial lung disease, and Duchenne muscular dystrophy. Because so few patients suffer from these diseases, there are often scarce or no drugs available to treat the conditions.

Dr. Hamid Reza Edraki, scientific board member of SBMU & RADOIR’s managing director was awarded the Golden Rose for his glorious scientific activities and impressive medical services.

RDI has signed a collaboration agreement with WHO to start the journey towards a global network of centers of excellence for rare diseases

Dr. Mahdi Shadnoush, the head of management center for transplantation and special diseases at the Iranian Ministry of Health had a meeting session in Dec.2019  about the status of rare patients at the Spanish Rare Diseases Research Institute in Spain as per the follow ups and arrangements done by Rare Diseases Foundation of Iran.

FDA approved “Fedratinib” (Inrebic) capsules for rare adult patients with special forms of Myelofibrosis.

Trikafta (elexacaftor/ ivacaftir/tezacagtor) as the first triple combined therapy for CF mutation has been approved.

Rare Diseases Europe, an alliance of over 800 rare disease patient organisations, is today urging Member States of the EU to take off the table the proposal of the Presidency of the EU Council to withdraw Article 7 of the current proposal for European cooperation on health technology assessment (HTA).

RADOIR’s scientific committee presented the “Atlas of The Rare Diseases In Iran” entitled with the genetic & congenital diseases and published for the first time to the Minister of Health of Iran

The Iranian Radiology Society recognized Dr. Hamid Reza Edraki, managing director of Rare Diseases Foundation of Iran as the best radiologist in Iran for the year 2019

On Friday  Nov. 8^th, 2019 at the venue, Eram Hotel in Tehran,  Dr. Hamid Reza Edraki, managing director of Rare Diseases Foundation of Iran was awarded the medal for the best radiologist of 2019 by the chairman of The Iranian Society of Radiology (ISR), Dr. Jalal Shokouhi and also the special mention for the same recognition was presented to him by Dr. Rabiee, the Iranian Parliament speaker.

The Best Radiologist in 2019

Dr. Edraki was born in Boroujerd province of Iran. He is the associate professor at SB Medical University of Iran. He received his MRI fellowship at LMU in Munich- Germany. During the past years, he has been attending at various national & international medical conferences and presented his outstanding researches on early diagnosis of rate diseases, fetal MRI and brain rare disorders, etc.

His last oral presentation on the 4^th semester of pregnancy via fetal MRI has brought him the best of success. It is to be mentioned that Dr. Edraki has also receive the special medal and mention as the best physician for the year 2016 awarded by Dr. H. Rohani , the Iranian president.