“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

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.

Two scientific articles on rare diseases received submission approval by SciTechnol Editorial Managers

RADOIR NEWS – SciTechnol is an international publisher of science, technology and medicine, also one of the media partners for 2018 World Congress on Rare Diseases 2018 in Dubai.

A new study published in Molecular Genetics and Metabolism, conducted by a Liverpool based research collaboration involving the University of Liverpool, has identified the drug that treats the extremely rare genetic disease alkaptonuria (AKU) which is called nitisinone stops the progress of AKU also known as black bone disease.

AKU is an iconic genetic disorder characterised by deficiency of the enzyme homogentisate dioxygenase, resulting in accumulation of homogentisic acid (HGA).