In a study at seven hospitals across the UK and the USA, researchers found the brain scan, called magnetic resonance (MR) spectroscopy. Brain damage affects around one in 300 births in the UK, and is usually caused by oxygen deprivation.
RADOIR at Hypophysis Diseases, Growth Hormone Disorder in Scientific Conference
The 7th Scientific Conference of Hypothesis Diseases, Growth Hormone Disorder in children and Adults was held on 21 December 2018 by the scientific secretary, Dr. Mohammad Khamseh and the executive secretory, Dr. Mojtaba Malek from Endocrine and Metabolism Institute of Iran Medical Science University at Parsian Evin hotel, Kooh-e-Noor hall.
Greatest Challenges Faced in Diagnosing Rare Diseases
Since it can take 5 to 7 years for a patient with a rare disease to receive an accurate diagnosis—which can be the gateway to appropriate treatments and access to life-saving clinical trials—a panel at this year’s National Organization of Rare Diseases’ Rare Diseases & Orphan Products Breakthrough Summit (NORD Summit) held in Washington, DC, delved into specific associated challenges and how providers might overcome them.
New Link Found Between A Rare Skin Disease and Beta-HPV
Researchers from The Rockefeller University recently uncovered the molecular mechanism which causes individuals with a rare skin condition to be susceptible to human papillomavirus (HPV).
RADOIR Membership at ICOSEP
Orphan Drug Act Resolution
Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.
This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies indicated to treat a rare disease. Now, there are over 700 and counting!
Countersigned b/w RADOIR and Medical Science Faculty of Tehran University
A Memorandum of Understanding has been countersigned between RADOIR and Medical Science Faculty of Tehran University for Research & Scientific collaboration
Children with Rare Diseases at the First Joy Campaign of RADOIR
The first Joy “Campaign of RADOIR” with the slogan “Rare but not Alone!” held on 10th Dec, 2018 with the presence of some Comedians, storytellers, children’s favorite show men and clowns.
Treatment on a rare Genetic Disorder causes Colon Cancer in Children
A university of Houston pharmaceutical scientist is developing a drug which could bring relief to children suffering with Familial Adenomatous Polyposis (FAP), a rare genetic disorder characterized by hundreds if not thousands of colorectal polyps. This hereditary cancer predisposition syndrome occurs in 3 per 100000 live births and, if left untreated, causes colorectal cancer in patients nearly 100 percent of the time. Prior medication for the diseases failed because it increased the risk of heart attacks and death.