Patients with rare diseases face many challenges in their healthcare journey. Often patients with rare diseases experience a delay in diagnosis or may remain undiagnosed. Patients often must have multiple diagnostic tests and travel distances to access specialist care. There are also often a lack of U.S. Food and Drug Administration (FDA) approved treatments available to treat rare diseases. Patients with rare diseases often also face financial, legal, and insurance challenges. This toolkit provides healthcare providers with information and resources to help empower their patients with rare disease to find information about their rare diseases and make informed healthcare decisions.
Register for our free virtual Rare Disease Month programs, every Wednesday at noon for the month of February.
Get started learning about rare diseases and finding resources to support patients with rare diseases and their families with the links below or use the menu on the left to find more specific information.
Health and Wellness Library
In the Gateway Building
1200 E. Marshall St., Richmond, VA 23298
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(804) 828-2432
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