This week, governor Brian Kemp signed legislation establishing a Rare Disease Advisory Board (RDAC) in Georgia. This advisory body will be composed of a variety of stakeholders, including patients, caregivers, healthcare providers, researchers and patient advocacy organizations, and will advise the Georgia General Assembly and other state agencies and departments on the needs of people living with rare diseases living in Georgia Georgia. The RDAC is tasked with activities such as conducting surveys to better understand common challenges faced by rare disease patients or caregivers, consulting with experts to improve access to quality healthcare, and compiling resources on rare diseases.
There are more than 7,000 known rare diseases affecting approximately 25 to 30 million Americans, more than half of whom are children. People living with rare diseases face many challenges, including delays in obtaining an accurate diagnosis, finding a healthcare provider with expertise in their condition, and a lack of affordable access to therapies and medicines to treat rare diseases.
“Tuesday was an incredible milestone for the rare community in Georgia. I would like to express my sincere gratitude to Governor Kemp, who signed the Rare Disease Advisory Council Act into law. It is truly an honor to serve and advocate for children and adults with rare and complex diseases,” he said Beth Nguyen, RNthe volunteer state ambassador for the Georgia Rare Action Network of the National Organization for Rare Disorders (NORD).
“This newly established RDAC will provide a platform for the rare community to have a stronger voice in the state Georgia. These advocate-built councils are a great example of community engagement and partnership between families and government. NORD would like to express our appreciation for the representative Mike Cheokas for being a champion georgia rare disease community by sponsoring this important legislation and making sure it crosses the finish line,” he said Heidi RossVice President, Policy and Regulatory Affairs, NORD.
NORD launched a new initiative in 2020, Project RDAC, with the aim of increasing the number of RDACs nationwide and helping to optimize existing RDACs. A total of 21 states have signed legislation creating an advisory board for rare diseases, including six in 2021 alone.
For more information on NORD’s RDAC project, visit https://rarediseases.org/projectrdac/. To learn more about NORD’s policy work, visit: http://bit.ly/Policy-Issues.
About the National Organization for Rare Diseases (NORD)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy group representing all patients and families affected by rare diseases United States. NORD began as a small group of patient advocates forming a coalition to unite and mobilize support for passage of the Orphan Drug Act 1983. Encouraging education, promoting medical research, and providing patient and family services to those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates in all 50 states and national and global partners, NORD fulfills its mission to improve the lives of those affected by rare diseases. Visit rarediseases.org.
SOURCE National Organization for Rare Diseases (NORD)