The providing and editing of the national rare diseases document is one of the most vital activities of the Rare Diseases Foundation, and in this regard, the Rare Diseases Foundation of Iran, with a lot of endeavor and follow-up, and with the participation and cooperation of the professors and expertise of the Foundation and other universities of medical sciences, prepared and compiled the National Document of Rare Diseases of Iran, which after being approved by the Secretariat of the Supreme Council of Health and Food Safety and the cooperation and collaboration of the honorable officials of that ministry and other related institutions, was finally approved by the honorable president and announced. Undoubtedly, the declaration of this document can be a very huge and effective step in determining the duties of the institutions and beneficiaries related to these patients, providing services to rare patients and their families, and solving the problems of these patient respectfully
10 Sep2018
New Treatment For “Fabry Disease”
FDA approved Galafold (migalastat) as the first oral medication for the treatment of Fabry disease that is a rare genetic disorder.
Fabry disease is a rare and inherited genetic disorder when a type of fat called Globotriaosylceramide is built (GL-3) in blood vessels, the kidneys, the heart, the nerves and other parts of the body & it affects both females & males.
05 Sep2018
The Definition of Genetics
A disease or condition caused by an absent or defective gene or by a chromosomal aberration & Genetic disorders may be hereditary. Sometimes there is a mutation, a change in a gene or genes.