Managing the Financial Costs of a Rare Disease

The overall financial cost of managing a rare disease diagnosis can be hard for patients and families, even with the best health insurance coverage.

Managing a rare disease diagnosis often includes buying prescription drugs, which may include expensive orphan drugs. Rare disease patients and families might also have to pay for specialized medical equipment, travel to multiple specialists, and full-time or part-time caregiving.

While the financial challenges for people living with a rare disease can be difficult, state and federal resources are available to help manage the costs for those who qualify.

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