Rare Disease Day 2012
UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE AT SHANDS HOSPITAL HOLDS 2ND ANNUAL RARE DISEASES DAY EVENT
The LGDA and the Orthopaedic & Sports Medicine Institute at the University of Florida College of Medicine & Shands Hospital, Gainesville, FL, joined together to organize the 2nd Annual Rare Disease Day event, comprised of an all day exhibit featuring information booths on rare bone diseases, including bone tumors. The event took place on Rare Disease Day, Wednesday, February 29, 2012, in the Grand Atrium of UF/Shands Hospital. Rare Disease Day is an international advocacy day conceived to raise awareness of rare diseases as a global health challenge and sponsored by National Organization for Rare Disorders (NORD) and Rare Diseases Europe (EURORDIS).
The inaugural UF/Shands exhibit on Rare Disease Day 2011 consisted of a single table that proved a great start at increasing awareness and providing information. “This year the interest has been tremendous,” reports John Reith, MD, Clinical Professor & Director of Bone and Soft Tissue Pathology, UF–Shands, primary organizer of the event. More than a dozen groups participated in the event, which featured information about lymphangiomatosis and Gorham’s disease and other rare diseases. Joining in organizing this year’s event is the Byrne Lab for Orphan Disease Research, which studies Pompe disease, Barth syndrome, and Duchenne and Becker muscular dystrophies, among others.
The exhibit was hosted by Dr. Reith, a founding member of the LGDA Medical Advisory Council; Kathy Boudreau, a member of the Byrne Lab; and Jack Kelly, LGDA President, assisted by a number of others from UF Shands.
This post was updated March 12, 2012.