The National Economic Burden of Rare Disease in the United States in 2019 April 01, 2022 Share this page Comprehensive assessment of the total economic burden of rare diseases (RD) in the United States (U.S.) in 2019. Value Assessment Diagnostic Odyssey Care Access Medicaid Prescription Coverage & Reimbursement Related Articles EveryLife Foundation for Rare Diseases Emboldens Advocates and Urges Congress to Prioritize Patients During 15th Annual Rare Disease Week on Capitol Hill March 10, 2026 Rare Disease Week 2026: Senate Hearing Recap February 27, 2026 What’s Next in 2025? Rare Disease Policy Opportunities in Congress July 29, 2025 See All News