Rare Disease Day 2013


rdd_logo with 2013 dateFor the third consecutive year the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is participating in the Rare Diseases Day Awareness Event at the University of Florida, Gainesville.  Along with Dr. John D. Reith, Professor and Director of the Bone Pathology Lab, UF/Shands, the LGDA inaugurated this event in 2011 by hosting an information table on Gorham-Stout syndrome and other rare diseases in the Grand Atrium of Shands Hospital.  Joined by the Byrne Lab – Orphan Diseases Research at UF, the 2nd year event grew to represent more than a dozen rare diseases, including Pompe disease and neurofibromatosis.

This year, in anticipation of the growing interest of other rare disease advocacy, the event is being moved to the Founder’s Gallery in the Medical Sciences Building at UF.  The lead hosts of the event will again be Dr. Reith, a member of the LGDA Medical Panel; the LGDA;  and the Byrne Lab – Orphan Diseases Research.

Representing the LGDA this year will be Herb Goldfarb, MD and his wife Beverly.  Dr. & Mrs. Goldfarb are grandparents of a child with Gorham-Stout syndrome.

At a second event this year, the LGDA and our partner for lymphangiomatosis & Gorham-Stout syndrome research, the Lymphatic Malformation Institute (LMI), have been invited by the Sanford-Burnham Medical Research Institute of La Jolla, CA, to be panelist speakers at their Fourth Annual Rare Disease Day Symposium.  Two LGDA Board Members,  Jack Kelly, LGDA president, and Tiffany Ferry, LMI president, will speak on behalf of our worldwide patient community and the research approaches to make an impact on stopping the diseases. Both the LMI and the LGDA are co-sponsors of the event this year. Matt Warman, MD, Professor of Orthopedic Surgery, Harvard, and Director, Orthopedic Research Lab, Children’s Hospital Boston will also speak about the genetics of  Gorham-Stout syndrome.