Undiagnosed Diseases Network Foundation

The Undiagnosed Diseases Network Foundation (UDNF) is a patient-driven nonprofit that fosters community, support, innovation, and action for families navigating the uncertainty of rare and undiagnosed conditions. Together, we can deliver on the hope for connection, answers, and improved outcomes.

For people facing rare disease, the journey to a diagnosis is long, isolating, and costly. Families encounter more barriers than pathways and more questions than answers. Patients may see dozens of doctors and undergo countless tests before receiving a diagnosis. Even then, many rare and ultra-rare diseases have no known treatment. The impact is widespread, an estimated 25 million Americans are living with rare and undiagnosed conditions.

The UDNF is here to help. We are home to a community of support, where people can connect with others who understand their journey. We provide access to professional navigators, resources, and information, giving patients guidance through the complex healthcare system and more. We connect patients to research in rare and ultra-rare disease diagnosis and treatment, driving progress toward answers and potentially cures. And we take action with the rare and undiagnosed community to improve their experience and outcomes. 

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