18 rare diseases were approved and added to the list of rare diseases at the 9^th RADOIR’s medical committee on Wednesday 21^st Nov, 2018.

Calling for the 3rd International Peace Festival of little Storytellers; this time by inviting Rare Artist children

22 Nov – 02 Dec, 2018

Co-operation between the Rare Diseases Foundation of Iran and the ECO Cultural Institute in order to represent and discover the talents of the rare patients and enhance the spirit of peace and humanity in the ECO region.

Maryam, seven-year old child affected by Xeroderma Pigmentosum from one of the deprived village in Iran traveled 2000 km to Tehran, for lack of health and medical services. Her father says that the sign and symptoms of Xeroderma Pigmentosum have appeared on her skin since 2013. It’s about years he traveled between cities because of his daughter’s disease, since there isn’t any healthcare facilities in small villages and her condition is getting worse. These days her lips and eyes are affected too.

ECRD 2018 took place on 10-12 May 2018, at Messe Wien Congress Center, Vienna, Austria.

“Rare Diseases 360° – collaborative strategies to leave no-one behind” was the overarching theme of ECRD 2018. This theme reinforces the unique quality of this foremost event for the rare disease community in Europe, bringing together and facilitating effective policy discussions between all rare disease stakeholders. It also encompasses the comprehensive range of topic areas covered at the conference and the viewpoint of rare disease patients as equal experts, representing all rare diseases, across borders.

The first anniversary of Dr. Ali Davoudian, the father of Iranian rare patients coincides with  the demise of Imam Reza in Aban 16^{th ( 30th October)}  in his birthplace (Bahnamir) with the presence of the country and provincial authorities; including Mr Govahi, representative of the supreme leader, Sardar Nanvakenari, chairman of the national security committee.

RADOIR NEWS – Eleven rare diseases approved at RADOIR to complete its directory in 2018

11 rare diseases were approved and added to the directory of 218 rare diseases at the 8^th RADOIR’s medical committee.

http://radoir.org/en/wp-content/uploads/2018/11/rare-diseases-meet-2019-37562-brochure96885-1.pdf

Description of the project

Healthcare is an important part of human life. Providing the best medical facilities for people with rare diseases is an integral part of today’s society. Thus, RADOIR designed an automatic system for Patients’ registry. The main goal is to establish an integrated system without paper works and with access to all sections; medical services, research and development, pharmaceutical, associations and other affiliated centers to provide better services for rare patients.

A joint meeting between Rare Diseases Foundation of Iran, Optical research center of Medical Science of Shahid Beheshti and the Institute for supporting patients with RP held on Thursday 24^th Oct. 2018 in regard with RP patients’ registration in SABNA.