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:

Update on the European Commission/EMA–FDA bilateral of 18-19 June 2018

Senior officials from the European Commission (EC), the European Medicines Agency (EMA) and the United States Food and Drug Administration (FDA) held their 2018 bilateral meeting in Brussels, Belgium, on 18 and 19 June. The two-day bilateral regulatory dialogue allowed the strategic partners to review their ongoing cooperative initiatives, discuss strategic priorities for the coming years and further strengthen the continuous close collaboration with specific action in the field of pharmaceuticals. The collaboration between EMA and FDA formally started in 2003 and has gone from strength to strength. The two agencies have daily interactions, most of them structured around working groups or ‘clusters’, with the aim to advance scientific and regulatory excellence worldwide.

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.

By Dr. Hamid Reza Edraki, RADOIR Managing Director

Vienna has always been the symbol of love and romanticism for me. How lucky I am, for the headquarters of Joint European Rare Diseases Society was located in the realm of music and timeless fine arts. The second reason for my happiness is the location of the European Radiology Association in the heart of Vienna. Eventually, the German language is another reason to remind me all the memories belonging to those days I was studying in Germany and Austria .

The EURORDIS ‘how to’ webinar series for patient organisations provides interactive training on practical skills such as how to cultivate volunteers, social media and governance. Webinar speakers include fellow patient organisation leaders, topic experts and EURORDIS team members. Each webinar will include an interactive Q&A, during which participants can ask speakers their own questions. The knowledge shared through the webinars will be useful to participants wanting to grow or improve the structure or communications of their own patient organisation.

The webinars are designed for participants from patient organisations or patients looking to set up patient organisations only.

The first EURORDIS ‘How to’ webinar was led by Claudia Crocione on “People raising” and how to find, cultivate and motivate volunteers and took place in January 2018. Watch a recording of the webinar.

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 .