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.

By Sarah Borden Our lives changed forever the day we learned our son Eli was diagnosed with Fanconi anemia. Just days earlier, we had celebrated his fourth birthday with family and friends, blissfully unaware of the journey ahead. When faced...