Scientific board of Rare Diseases Foundation of Iran joined 2018 Int’l Epigenetics & Epitranscriptomics Conference which was held during November 26-27 in Helsinki-Finland at which RADOIR was one of the main collaborators.
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 16th ( 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.