Last week, the Everyday Life Foundation presented to Florida’s Genetics and Newborn Screening Advisory Council on their efforts to advance early diagnosis and treatment through robust newborn screening programs across the United States. Currently, Florida screens for every disease recommended by experts except for MPS I, Pompe, and X-ALD. The Foundation will work with patients and other advocates to introduce legislation in Florida this month which will ensure the diseases listed above as well as any added to the federal list of recommendations will be screened for.
To get involved, consider joining EveryLife’s Newborn Screening Working Group, which is free for patient organizations. If you or someone you know is interested in providing testimony or supporting our efforts in Florida, please contact Vignesh Ganapathy, Associate Director of Advocacy and Government Relations, at firstname.lastname@example.org.