The development of orphan drug was incentivized financially in 1983 via the Orphan Drug Act in the US. Before this law, 38 orphan drugs were approved. The Act was then adopted in other markets: in 1993 in Japan and in the European Union in year 2000.
RADOIR and NBML Signed Agreement
RADOIR News– To develop the scientific research collaboration on brain disorders, Rare Diseases Foundation of Iran and Iranian National Mapping Lab signed contract agreement on 23th July 2018 .
RADOIR Membership at European Medicine Agency (EMA)
RADOIR is ranked alongside the active members of the Stakeholder Information Bank for EMA.
- RADOIR NEWS- The European Medicine Agency (EMA) was established in 1995 in London. Its support and services in line with the Sustainable Development Goals are as per followings:
RADOIR at the 6th Symposium and 3rd National Festival of Self-care & Patient Education – 2018
The 6th Symposium and 3rd National Festival of Self-care & Patient Education will be held on 24th July, 2018 in Tehran
RADOIR News– Rare Diseases Foundation of Iran will attend at the 6th Symposium and 3rd National Festival of Self-care & Patient Education.
RP Diseases Association at Kermanshah Branch-RADOIR
RP Diseases Association at Kermanshah Branch-RADOIR and The Clinical Genetic Research institute of Prof. Farhood Attend RP Patients Free of Charge
Dr. Aryaiee Tabar, head of RP Diseases Association at Kermanshah Branch of RADOIR together with the clinical genetic research team visit and attend RP patients free of charge.
RADOIR News- Dr. Hamid Aryaiee Tabar, Retina Specialist and Prof. Farhood, Genetic Specialist are both members at Rare Diseases Foundation of Iran’s Medical Commission.
RADOIR at World Congress on Rare Diseases & Orphan Drugs 2018
RADOIR delegation will attend at 2018 World Congress on Rare Diseases and Orphan Drugs which is held on 5-7 Dec., 2018 in Dubai, UAE
RADOIR News- World Rare Disease Congress 2018 as the premier interdisciplinary gathering for pharmacists, neurologist, virologists and healthcare experts presents developments, innovations and applications in all areas of rare diseases and orphan drugs. The theme of the conference is “ Fighting Rare RADOIR delegation will attend at 2018 World Congress on Rare Diseases and Orphan Drugs which is Diseases with Innovative Techniques”.
Rare Diseases Training Courses for School Principals of Iran
On Sunday 24th June, 2018, Dr. Seyed Mohammad Bathaie, the Minister of Education agreed: “We provide all facilities to promote school principal’s awareness through training courses on Rare Diseases via interactive networks.”
RADOIR News– During the meeting with Dr. Bathaie, the minister of education, he emphasized on raising students’ awareness about Rare Diseases. He also mentioned the weak points of the educational system in this regard: “Students must be trained how to behave and socialize with Rare Diseases Patients like EB. These patients should not be isolated from the society and left alone.
Dossier Revision of Rare Patients at RADOIR’s 2nd Medical Committee
During the 2nd medical committee of the Rare Diseases Foundation of Iran, the dossier of 4 suspected patients were checked & revised to refer to health & genetics clinics for further diagnosis .
Insights into Genetics Underlying Debilitating Pediatric Kidney Disease
New research provides insights into the genetics underlying a debilitating kidney disease in children.These remarkable findings which were published in the Journal of American society of Nephrology (JASN) ,attract specialists’ attention in that particular field.
State of Rare Disease Management in Southeast Asia
Mohamed Azmi , Ahmad Hassali
Orphanet Journal of Rare Diseases2016
Background:
The state of rare diseases
Rare diseases are serious and can be life threatening. Even where treatment is available, the disease will likely be a lifetime condition for the patient. While they are characterized by their rarity (less than 1:2000 in Europe, 1:1500 in United States of America, or 1:2500 in Japan), they can collectively affect 1 in 15 persons worldwide .Therefore, while the prevalence of rare