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Rare Diseases Information Toolkit

Rare Disease Toolkit for patients and families, providers, and students to learn more about the barriers faced by patients with rare diseases. This toolkit will provide information and resources for patients with rare diseases to help them navigate their

About

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

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.

Rare Disease Day

Ask Us! Health and Wellness Library

Health and Wellness Library

Come see us

In the Gateway Building
1200 E. Marshall St., Richmond, VA 23298

Call us

(804) 828-2432

E-mail us

healthlibrary@vcuhealth.org