Resources
Finding reliable information can be challenging when you or someone you care about has a rare disease. PARDAC has compiled these trusted resources to help patients, families, healthcare professionals, researchers, lawmakers, and advocates find information, support, and opportunities to get involved.
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Rare Foundation (formerly EveryLife Foundation)
A national nonprofit that empowers people affected by rare diseases to advocate for science-driven policies that improve diagnosis, treatment, and access to care. Its resources include advocacy training, state and federal policy tools, research and policy information, and opportunities to engage with policymakers.
Undiagnosed Diseases Network
A national research network funded by the NIH that brings together clinical and research experts to diagnose individuals with rare or previously unrecognized medical conditions.
University of Pennsylvania Orphan Disease Center
Penn’s center for rare disease research and therapy development. It funds translational research and works with patient groups.
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