Rare Disease Day Event

 

LGDA President Jack Kelly to speak at Rare Disease Day Event

 

The LGDA and other advocates have joined with the National Organization for Rare Disorders (NORD) to sponsor a Statehouse Event dedicated to educating and informing the public, elected officials, legislative staff and the media:

Georgia Rare Disease Day State House Event
Friday February 27, 2015
State Capitol Building
206 Washington Street Southwest, Atlanta, GA 30334
12:30 pm – 2:30 pm

Many important decisions related to rare diseases are made at the state level, including funding for support services to help families cope with complex medical needs; an environment that promotes innovative medical research and product development; and insurance practices that assure patient access to medically-necessary therapies. The implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the health care needs of Americans are addressed. These legislative advocacy events are among the most important ways of raising awareness of the impact of rare diseases on the 1 in 10 Americans affected.

During the event participants will have the opportunity to meet and hear from patients, advocates, Georgia State legislators and their staffers. This year’s theme is “Living with a Rare Disease: Day by Day, Hand in Hand.” The day will begin with an informal Meet & Greet where attendees will be able to connect with one another and share information and experiences with one another. The formal portion of the event will begin with remarks from LGDA President Jack Kelly, after which legislative members, patients, and medical professionals will speak.

The event is organized by patient advocates who have joined with the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases, and national sponsor of Rare Disease Day in the U.S., to educate and inform the public, elected officials, legislative staff and the media.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 Americans. One in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. Many diseases are not being studied by medical researchers. Often, research gets funded by the families and friends of patients or by patient organizations.

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.

For more information, directions, and to register to attend, see the Rare Disease Day event page.