About UDNF

Overview

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

For people facing a 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 finally receiving a diagnosis. Even then, many rare and ultra-rare diseases have no known treatment. The impact is not rare, an estimated 25 million Americans are living with rare and undiagnosed conditions.

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

At the core of the UDNF is a connection to the national Undiagnosed Diseases Network (UDN), a research network that aims to find answers for people facing mysterious and rare conditions.