Rare Diseases Foundation of Iran has always been trying to maintain non-stop communication with research and academic centers working on rare diseases extending its support for their activities. Within this frame work the foundation has given priority to the support for the relevant applied studies; in this respect the foundation’s department for research is of clear and transparent instructions.
Scientific and research activities
Drawing up the rare disease atlas: This collection has been prepared based on primary requirements, the public education of the patients and each and every type of the rare disease providing basic information for raising primary knowledge on the rare disease and the relevant treatment needed to be provided. The materials produced in the atlas include general information on the disease, the symptoms, category of disorder, the disease categories and sub – categories, prevalence and appearances, causes and physiopathology, damages and disabilities probably caused by the disease, diagnostic and treatment methods, the needed care and prior knowledge on the disease. It is worth mentioning that presently large number of patients or people with rare disease symptoms are examined for rare diseases in order for their diseases to be registered in the relevant world list and the extent of incidence of the diseases are calculated and subject to change.
Until now around six to eight thousand rare diseases have been identified in the world and it is said that about thirty million people in Europe and twenty nine million in USA are suffering from these diseases. In Iran one million and two hundred thousand rare patients with rare diseases are living. High incidence of such diseases is indicative of the pressing need for us to attend to these diseases and the rare disease patients living conditions. Atlas of the rare diseases of Iran has been prepared by the foundation in cooperation with the West Azerbaijan University of Medical Sciences and it is considered as a reliable reference for rapid diagnosis of rare diseases and precise identification of their symptoms.
Publication of the Nedaye Nader specialized monthly magazine; since January 2011.
Publication of the Safire Salamat as the first specialized monthly magazine in the field of health tourism with the aim of improving health quality of people from different walks of life ; this magazine includes educational subjects for all interested parties.
Preparation chronicles on the activities of the foundation since its establishment in cooperation with ECO Organization.
Translation and publication of the book titled untold stories of 12000 rare disease patients (in 50000 copies) in Persian language countries in cooperation work ECO Organization.
Operation of the news website of the foundation; radoir.com nadernews.com, parsian-mic.com
Publication of 39 magazines and books since establishment of the foundation (September 2016).
Registration of the foundation as the organizer of the world Rare Disease Day (RDD).
Registration of Iran in the World Organization for Rare Diseases Website and embarking on joint cooperation for using outcome of the international achievements. Setting up the news site of the Foundation titled “Nadernews”; www.nadernews.com
Carrying out feasibility studies for construction of an advanced diagnostic center for rare diseases in cooperation with the Fars University of Medical Sciences.
Holding a meeting for looking into production of herbal medicine with participation of physicians and experts from the Fars University of Medical Sciences.
Preparing plans and programs for rendering services to patients in 32 provinces, introducing them to the supreme council for provinces approving and communicating them to province (May 16th 2014).