RADOIR 2019 National Contest to Hunt The Best Rare Motto !

2019 Marks the 10^th “Rare Disease Day” Celebration at “Rare Diseases Foundation of Iran (RADOIR) in Tehran.

RADOIR News- The contest is for the rare patients and their advocates all over Iran. But RADOIR welcomes hearing the international rare voices through their slogans and Mottos. You can share your global slogans via: international@radoir.org

The themes & objectives for the slogans are :

• The globalization of rare diseases
• The impression to motivate the rare patients
• Rare Children

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.

 Iran signed the UHC2030 Global Compact and we warmly welcome them to the partnership. 

The experience of Iran over past decades and most recently with the Health Transformation Plan (HTP) shows the importance of developing and maintaining health systems with a strong foundation in primary health care and local participatory processes to ensure that health needs are met in an affordable way. The recently-launched National Health Assembly demonstrates the unique role of civil society and community representatives in mobilizing political commitment for universal health coverage (UHC), providing a viable link from local-level to national participation and decision-making.

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:

Join Us and help us to Raise Awareness of Acute Necrotizing Encephalopathy on 31st July 2018

ANE International believes that raising awareness of Acute Necrotizing Encephalopathy will save lives. With initial symptoms being typical of viral illness and many cases being from influenza, many ANE patients are initially turned away from hospital emergency rooms. In most cases the patient is already showing unusual symptoms which are overlooked. These may include double vision, unsteadiness of gait, vomiting and extreme lethargy, some are already having seizures which if initially brought under control are put down to febrile seizures.

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”.

EURORDIS – List of the latest marketing authorisations and orphan medicinal products designations

Detailed information on European orphan medicinal products designation applications is available on the EMA website. A full list of designated and authorized orphan medicinal products in Europe available at: ec.europa.eu.

The table is available here: