The so-called ‘orphan drugs’ are intended to treat diseases so rare that sponsors are reluctant to develop them under usual marketing conditions.

The process from the discovery of a new molecule to its marketing is long (10 years in average), expensive (several tens of millions of euros) and very uncertain (among ten molecules tested, only one may have a therapeutic effect).

The 2nd award of Corporate Social Responsibility (CSR) was held on 24^th July, 2018 with the presence of major domestic companies .

RADOIR News- Corporate Social Responsibility (CSR) is a self-regulating business model that helps a company be socially accountable to itself, its stakeholders, and the public.

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 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 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:

The 6^th Symposium and 3^rd National Festival of Self-care & Patient Education will be held on 24^th July, 2018 in Tehran

RADOIR News– Rare Diseases Foundation of Iran will attend at the 6^th Symposium and 3^rd National Festival of Self-care & Patient Education.

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 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”.

On Sunday 24^th 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.

During the 2^nd 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 .