There are more than 7,000 known rare diseases that affect approximately 350 million people across the globe — including some 30 million Americans. Now, Florida may be offering those individuals some much-needed hope,
The Legislature passed a bill (SB 1582) that would create a grant program to fund scientific and clinical research on rare diseases. It awaits Gov. Ron DeSantis’ signature.
One of those affected is bill sponsor Rep. Adam Anderson, whose son Andrew suffered from Tay-Sachs disease. The grant program would be named after Andrew, the Andrew John Anderson Pediatric Rare Disease Grant Program.
Andrew was diagnosed with Tay-Sachs disease, an ultrarare fatal genetic disorder with only 16 cases annually nationwide, and passed away at just 4 years old.
Since then, 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.
“Today marks a significant victory for families and individuals impacted by rare diseases not only in Florida but around the world. The establishment of the Andrew John Anderson Pediatric Rare Disease Grant Program conveys our promise to push the boundaries of science and medicine. We are determined to make Florida a beacon of hope and a leader in the quest for cures and effective treatments for rare diseases,” Anderson said of the bill’s passage.
If it becomes law, the program would facilitate scientific and clinical research grants to study pediatric rare diseases. The bill 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.
“Tay-Sachs disease is one example of an ultra-rare condition that is one hundred percent fatal in children,” said Cure Tay-Sachs Foundation President Rick Karl. “To date, there has been no effective treatment. This comprehensive effort by Rep. Anderson and the Florida Legislature offers hope where there has been none before.”
While the bill awaits the Governor’s signature, the Florida Department of Health is already preparing to implement a competitive, peer-reviewed process by which to award grants. The process will emphasize collaborative efforts across state agencies, academic institutions and the health care community.
The measure cleared both the House and Senate unanimously among all members present at voting.
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