Janelle Irwin Taylor
The House has cleared and sent to the Senate for consideration a bill that would increase research into pediatric rare diseases.
The measure (HB 907), sponsored by Republican Rep. Adam Anderson, is dubbed the Sunshine Genetics Act. It would establish the Florida Institute for Rare Diseases within the Florida State University (FSU) College of Medicine to identify ways to improve outcomes and increase quality of life for kids and families suffering from rare diseases.
“The Sunshine Genetics Act represents hope — for families, for the future, and for what’s possible when science and compassion come together,” Anderson said.
“As a father who lost a child to a rare genetic disease, I know the heartbreak and uncertainty too many families face. This bill puts Florida on the front lines of research, early detection, and treatment. It’s about ending the diagnostic odyssey and making sure no family ever feels alone on this journey again.”
The measure would also create the Sunshine Genetics Pilot program, which would offer genetic screening for newborns over a five-year period.
It would also establish the Sunshine Genetics Consortium, creating increased collaboration among geneticists, physicians, researchers and academic institutions and supporting innovation in genetic and precision medicine through annual reports. A board representing major medical and research organizations would oversee the consortium.
The bill will now head to the Senate for its consideration. If signed, it would take effect July 1.
Sen. Colleen Burton is carrying the Senate counterpart (SB 1356), but her bill has stalled.
The issue of rare diseases is one Anderson often champions. His son, Andrew, suffered from Tay-Sachs disease, an ultrarare fatal genetic disorder with only 16 cases annually nationwide.
FSU opened a pediatric rare diseases institute last February after Anderson advocated for it and secured an initial $1 million grant. He later helped secure another $5 million in state funding, announced at the institute’s first symposium. The institute is part of FSU Health and works to help kids with rare diseases through research, education and clinical care.
There are more than 7,000 known rare diseases that affect some 350 million people worldwide, according to Anderson’s Office. His bill seeks to expand testing for such diseases, while accelerating medical research into their treatment and bringing hope to those who suffer and their families.
Last year, Anderson successfully ushered through a bill (SB 1582) that created a grant program to fund scientific and clinical research on rare diseases.
The program facilitates scientific and clinical research grants to study pediatric rare diseases and calls for collaboration among universities, research institutes and community practitioners to ensure a comprehensive approach to advancing detection and treatment of rare diseases in children.
Since his son’s death, Anderson and his family have been active in advancing research in rare diseases through the Cure Tay Sachs Foundation and their AJ Anderson Foundation. Anderson previously worked with former House Speaker Chris Sprowls to create Tay Sachs Awareness Day in Florida on Aug. 10, Andrew’s birthday.
