“Is your Child growing normally? Find out! Because a child’s growth is a major sign of their health.”

ICOSEP ( International Coalition of Organizations Supporting Endocrine Patients) _ For decades there has been battle over misunderstanding that children’s growth is a cosmetic. It has been very frustrating as ICOSEP have helped to identify children with brain tumors, adrenal issues and much more who were failing and growth was a major symptom which was discounted. They  have made too much effort to raise the public awareness. The only reference resource book correlates to growth is compiled and is free to download: Click Here

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.

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.

RADOIR NEWS – The medical and healthcare services and activities of Rare Diseases Foundation of Iran in the field of health were encouraged at the official meeting session with the heads of neighborhood doctors’ community and Board of Directors of Tehran Medical Center which was held in the presence of deputy of the General Manager of district 6 of Tehran, Mr. Habibolah Ghafouri, on the occasion of the Doctor’s Day.

RADOIR delegation will attend at 2018 International Epigenetics and Epitranscriptomics Conference which is held on 26-27 Nov., 2018 in Helsinki, Finland

A 6-year-old girl named Kamiyah who every day experiences several spell where her entire body freezes up – her lungs, her muscles, everything.

With Kamiyah, we’re not necessarily looking for a diagnosis, as NIH ( National Inistitute of Health) has identified the gene mutation causing these spells. We’re trying to help Kamiyah and her family find more people with this condition, so they can learn about it and potentially find some relief.

A male fetus is detected in 32 weeks of gestational age via Trans-abdominal sonography, right unilateral phocomelia diagnosis.

RADOIR NEWS- A type of congenital and genetic disorder was diagnosed in a male fetus after applying Fetal MRI 3 days before birth delivery by Dr. Hamid,R. Edraki, head of radiology section at RADOIR.