Anyone living with a rare disease wants access to care — not just substandard healthcare, but healthcare that will keep them alive and healthy. Sadly, this is often not the case for so many patients.
I am Laura Bonnell, the mother of two daughters with cystic fibrosis. For 30 years, I have advocated for my daughters to ensure they get the care they deserve, and to promote legislation that will assure their basic rights to care.