Georgia Advocates Hold Important Advocacy Event for Rare Disease Day®
Atlanta, GA February 17, 2017—Join rare disease patients, caregivers and other health care advocates looking to make a difference in Georgia on February 17th as part of Rare Disease Day® 2017.
During the event Beth Nguyen RN NORD Georgia Ambassador will highlight how Georgia performed on our state report card and what we are doing to take action in Georgia. Dr. Erik Fisher has an inspiring message for all those living with rare! Join us and listen as patients and families share their testimony with you! Afterwards, browse displays, pick up resources, meet others who can identify with your rare journey, and enjoy a refreshing snack.
Beth Nguyen RN, the NORD Georgia Ambassador volunteers to help provide others with a voice in the state of Georgia. She has a deep compassion for men, women, and children living with a rare or undiagnosed disease. Her difficult journey living with a rare disease coupled with her experiences serving as a bedside nurse for 15 years provide a strong voice to represent the rare community. She is now executive of a large 501c3 nonprofit spearheading advances in rare diseases at the state and national levels and remains very involved in advancing causes for rare diseases at a global level. It is important to get involved to advocate on behalf of children and adults with rare diseases so that definitive action can be put into place to aid in early identification, prevent complications, and ultimately help save lives worldwide.
Many important decisions related to health care that affect the 1 in 10 Americans with rare diseases are made at the state level, including prescription drug cost-sharing, newborn screening coverage, Medicaid and Children’s Health Insurance Program (CHIP) eligibility, and Medical Foods coverage. The implementation of the Affordable Care Act has highlighted the increasingly important role of states in assuring that the health care needs of Americans are addressed.
The event will be held at the Georgia Capitol Building in the South Wing from 1 to 5 pm. Participating organizations include NORD, Worldwide Syringomyelia & Chiari Task Force, Transverse Myelitis Association, NMO Association, SBA Georgia, Parent 2 Parent, Compassionate Friends, United Mitochondrial Disease Foundation, Angel Flight, Canine Companions for Independence, and more! Register to attend: http://rarediseaseday.us/
The event is organized by patient advocates who have joined with the National Organization for Rare Disorders (NORD)®, the largest and leading independent, nonprofit committed to the identification, treatment, and cure of rare diseases. NORD is the national sponsor of Rare Disease Day in the U.S. and it serves 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 nearly half of these patients are children. There are more than 7,000 rare diseases, 95 percent of which have no treatment. 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 people face. 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 about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, visit www.rarediseaseday.org. To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.
Media contacts: Beth Nguyen RN, WSCTF, 678-977-6119, [email protected]
Jennifer Huron, NORD, 203-744-0100, [email protected]