10 Sep2017
A rare look
The following booklet is to explain our awards, activities and etc in the last 12 years of rare diseases foundation of Iran.
10 Sep2017
Safir Salamat
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.
10 Sep2017
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.
10 Sep2017
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.
10 Sep2017
Ceoliac Society
The Coeliac Society is considered as the first national, scientific and supportive society that has been established in Iran (2001) belonging to the Coeliac affected patients. This society is the first supportive and scientific NGO at the national level in Iran with its main office in Isfahan. It is worth mentioning that thank to the untiring efforts by a number of professors, researchers and charity donors this society was officially registered with the concerned bodies in 2004.
10 Sep2017
Ichthyosis Society
Ichthyosis Society of Iran is a non-governmental body with 400 members. This society is supposed to presently start its activities in the medical and social areas with the assistance provided by a number of physicians and patients. The idea for the establishment of this society sparked in 2012 and members of its founding board were elected in 2016.02.27. This society is the relevant confirmation code issued by the Interior Ministry and its registration process is yet to be concluded accordingly.
10 Sep2017
Neurofibromatosis Society
Neurofibromatosis is a genetic disease that affects nerves and the skin. In Neurofibromatosis benign and non-cancerous tumors grow across the nerve fibers and such a growth will lead to emergence of some disorders in the skin and bones.
10 Sep2017
Primary Immunodeficiency Charitable Society
Her Eminence Sedighe Tahere Fatimeh (S) Primary Immunodeficiency Charitable Society was established in Isfahan Province.
Primary immunodeficiency is a disease that is caused by a deficiency in the immune system of the human organs (cells and proteins) as the result of which the affected organs can no more stand against infections caused by bacteria, parasites, and viruses.
10 Sep2017
Cerebral Palsy Society
Cerebral Palsy Support Society was established by late Ms. Eftekharolmalek Homayun and a number of other caring individuals rendering its services in form of supportive measures. Presently this society is managed by Mr. Morteza Khatibiyan.