Advocacy group leaders collaborated to develop comprehensive federal legislative language to ensure coverage parity for patients with rare genetic conditions in accessing specialists, medicines, and other necessary items and services within Medicaid.

Innovation in treatments, diagnostics, equipment, and other technologies supporting individuals with rare genetic conditions is outpacing Medicaid access. Innovation without fair access, however, will not help patients and their families. Discriminatory anti-innovation policies are preventing those with chronic illnesses and disabilities from obtaining medically necessary interventions – including access to experts in rare disorders.