People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.

Katherine (middle) with 2023's recipient Ana Tabar (left) and FCF CEO Isis Sroka (right) The De Los Santos family first experienced the complexities of Fanconi anemia as they endured the devastating loss of their daughter, Gracie, who passed away from...