ATLANTA – State Representative Sharon Cooper (R-Marietta), chair of the House Health & Human Services Committee, recently received a 2021 RareVoice Award from the EveryLife Foundation for Rare Diseases. She was honored during the foundation’s 10th annual awards ceremony on Dec. 15, 2021.
“It is an honor to receive this award from the EveryLife Foundation, and I want to express my sincerest gratitude to the foundation for speaking up for those with rare diseases,” said Rep. Cooper. “Currently, Georgia screens babies for about 33 diseases, which helps detect diseases in approximately 400 babies each year. Early screening for these diseases helps prevent lifelong disabilities, and even death. While our state has done a tremendous job prioritizing the detection of rare diseases in babies, House Bill 567 helps ensure that more newborns have access to these important and life-saving screenings.”
Rep. Cooper was nominated under the “State Advocacy: State Legislator” category for crafting state policies that help detect and treat rare diseases in newborns. During the 2021 legislative session, Rep. Cooper championed House Bill 567, which authorizes the Georgia Department of Public Health (DPH) to create a newborn screening system to help prevent serious illness, severe physical or developmental disabilities, as well as death caused by inherited metabolic and genetic disorders in newborns. The bill also creates the Newborn Screening and Genetics Advisory Committee to consider and make recommendations to the DPH commissioner regarding the inclusion of screening for any disorder added to the federal recommended uniform screening panel within one year of an addition.
The RareVoice Awards are a part of the foundation’s Rare Disease Legislative Advocates (RDLA) program, which is designed to support the advocacy of rare disease patients and organizations. The RDLA believes that every voice matters and that patients are the key to changing public policy. Award recipients are chosen by committee from nominations received from the rare disease community.
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
For more information on the EveryLife Foundation for Rare Diseases and its award program, please click here.
For more information on HB 567, please click here.
Representative Sharon Cooper represents the citizens of District 43, which includes portions of Cobb County. She was elected to the House of Representatives in 1996 and currently serves as Chairman of the Health & Human Services Committee and Vice Chairman of the Special Committee On Access to Quality Health Care. She also serves on the Judiciary Non-Civil, Regulated Industries and Rules committees.
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