Hydroxyurea treatment toolkit aims to help SCD patients’ parents

A toolkit may facilitate the active involvement of parents of young children with sickle cell disease (SCD) in shared decision-making regarding hydroxyurea treatment for their children, a study suggests. However, the odds of these young patients being offered and prescribed hydroxyurea were higher among those who received usual…

NIH Agency Pioneers Collaborative Research into Rare Diseases

A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. The Office of Rare Diseases Research (ORDR), headquartered in Bethesda, Maryland, was established in 1993 within the NIH Office of the…