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.

“If I had waited another six months, my story wouldn’t be the same.” Katherine was born into a world shaped by loss. Her older sister, Gracie, was diagnosed with Fanconi anemia (FA) shortly after the family moved to the United...