Legislation to improve and expand newborn screening in Florida (SB 1124/HB 963) unanimously passed both the Florida House and Senate last month. Rare disease advocates in Florida are encouraged to contact Governor Rick Scott to urge him to sign it into law without delay.
The legislation will require the Florida Genetics and Newborn Screening Advisory Council to review diseases recommended for screening at the federal level. If enacted, once the Florida Council recommends a disease for screening, the Florida Department of Public Health must seek funding for the new screen and implement with an 18 month timeframe.
The Foundation is thankful to the 144 patient organizations which supported the legislation and patient advocates who came to Tallahassee to testify on behalf of the rare disease community.
For more information on our efforts on newborn screening, please visit our newborn screening resource page.
