Georgia Rare Disease Day State House Event
Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients. Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations.
This year the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) hosted the first ever Georgia State Capitol National Rare Disease Day held on Friday, February 27, 2015. Through the tireless work of the LGDA, state legislators, legislatives aides, and medical professionals joined patients, family members, and other advocacy groups to learn about the common issues faced by all those in the rare disease community. LGDA President Jack Kelly opened the meeting, sharing with those in attendance the challenges faced by every person living with a rare disease. Participants also met and heard from patients, advocates, medical professionals, and Georgia State legislators and their staffers. During an informal Meet & Greet, attendees connected with and shared information and experiences with one another.
The LGDA is extremely pleased with the success of what will surely become an annual Rare Disease Day event at Georgia’s Capitol where patients, rare disease advocates, legislators, and medical professionals will continue to join together to improve the lives of those with rare diseases. It was a truly inspiring event and the LGDA is proud to have hosted one of 36 events held at state capitols nationwide and to be a part of the biggest celebration of Rare Disease Day to date!