After successful publication of the “Nedaye Nader (Voice of Rare) ” specialized magazine with the rare diseases as its main theme the Foundation, in line with its social mandate in promoting the health quality in different social communities, attempted to publish the “Safire Salamat ) Messenger of Health)” monthly magazine.
Atlas of rare diseases
Low prevalence of rare diseases has caused very limited studies done in this area. On the other hand the hereditary nature of these diseases has added more difficulties and complexity lowering the pace for identification of their causes and roots and accordingly their diagnosis and treatment.
Voice of 12000 patients with rare diseases
Translation and publication of the voice of 12000 patients with rare diseases in 10000 copies in cooperation with the ECO.
4 year-old child joined Rare Diseases Foundation of Iran
Narges was born with a congenital disorder, her spine and neck vertebrae had been sticking.
At first, there was just a limitation in moving her neck, it means she couldn’t move her head up or down and left or right. When she grows up, her waist gets the curved shape and it gradually gets worse.
The license for psychological and counseling center for rare diseases patients
The license for psychological and counseling center for rare diseases patients has been issued recently.
The Psychological and Counseling Organization of the Islamic Republic of Iran (PCO) issued a license for the establishment of a psychological and counseling center for Rare Diseases Foundation of Iran.
Report from Healing Prescriptions for Ramadan
The report from healing prescriptions for Ramadan has just released.
25 patients affected by Rare Diseases were identified in MRI section
Dr. Hamid Reza Edraki, the member of the scientific committee for Rare Diseases Foundation of Iran, announced the report from healing prescriptions plan. According to the report, 25 patients affected by rare diseases, 73 patients with congenital disorders, and 85 patients with MS were identified through healing prescriptions for Ramadan.
Scientific Deputy of Rare Diseases Foundation of Iran
Members of the Scientific Deputy of Rare Diseases Foundation of Iran were determined.
Members of the scientific deputy have been determined in order to reach scientific, educational, preventive and therapeutic goals because of Rare Diseases Patients.
Another honor for Rare Diseases Foundation of Iran
The college of the Rare Diseases Foundation of Iran is going to start its activities since October.
Another branch for Rare Diseases Foundation of Iran
Getting started the establishment of another branch for Rare Diseases Foundation of Iran in Golestan Province
During his trip to Golestan, Dr. Ali Davoudian has visited the head of Medical Sciences University and negotiated in order to establish a branch for Rare Diseases Foundation of Iran in Golestan province.
Results from the First Europe-Wide Survey on the Social Impact of Rare Diseases are out now!
Over 3,000 rare disease voices across Europe responded to the survey.
The survey was conducted via Rare Barometer Voices (a community of over 5,000 people living with a rare disease who regularly participate in EURORDIS surveys) in 23 languages across 42 countries.