Health socialization & social responsibility on health care system is the main topic of discussions during Dr.Hashemi’s ministership which was completely changed through emphasizing on NGOs’ impressive role, accordingly.
RADOIR at Hypophysis Diseases, Growth Hormone Disorder in Scientific Conference
The 7th Scientific Conference of Hypothesis Diseases, Growth Hormone Disorder in children and Adults was held on 21 December 2018 by the scientific secretary, Dr. Mohammad Khamseh and the executive secretory, Dr. Mojtaba Malek from Endocrine and Metabolism Institute of Iran Medical Science University at Parsian Evin hotel, Kooh-e-Noor hall.
RADOIR at International Epigenetics & Epitranscriptomics Conference
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.
Iranian Rare Diseases Directory Updated to 248 Rare Diseases
Calling for the 3rd International Peace Festival of little Storytellers
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.
A Child with Rare Skin Disorder at “Nader” Specialized Clinic
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.
Executive Summary for ECRD, 2018
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.