Since 2008, the medical field has designated February 28 as Rare Disease Day, a day to honor patients with all varieties of rare diseases. The international celebration has been practiced since 2009, when the National Organization for Rare Disorders offered its hand in spreading the day to others, helping to get advocacy groups in the United States—and eventually around the world—to observe the day.
NeurologyLive® proudly works in partnership with several rare disease advocacy organizations—including the ALS Association, Cure SMA, the Dravet Syndrome Foundation, the Lennox-Gastaut Syndrome Foundation, the TSC Alliance—aiming to increase awareness and inform clinicians of the latest advances for these rare and challenging-to-treat disorders. In observance of Rare Disease Day, our team spoke with experts on the current state of care and treatment for a few rare diseases implicated in neurological care, including Friedreich ataxia, myotonic muscular dystrophy, among others.
Read more at: https://www.neurologylive.com/view/rare-disease-day-updates-on-friedreich-ataxia-and-myotonic-muscular-dystrophy