September 10, 2026 Big news for our community. UDNF has partnered with Citizen Health, and we want you among the first to take part.Citizen Health was built for rare disease by people who live it, including co-founder Nasha Fitter, a rare disease parent. That lived experience...
August 31, 2026 UDNF to bring the voice and experiences of the undiagnosed community to a federal initiative aimed at transforming rare disease diagnosis. WASHINGTON, D.C. — August 31, 2026 — The Undiagnosed Diseases Network Foundation (UDNF) today announced it has been selected as a Patient...
August 26, 2026 The Undiagnosed Diseases Network Foundation Unveils the Undiagnosed Patient Bill of Rights After years of navigating a healthcare system that too often left them without answers, without support, and without a voice — the undiagnosed community has spoken for itself. The Undiagnosed Diseases Network Foundation...
August 26, 2026 The numbers are in — and they tell a powerful story about where Americans stand on one of medicine's most overlooked challenges.Today, new data was released that showed Americans’ support for people living with undiagnosed diseases, but revealed a significant awareness gap. We...
July 22, 2026 About The Undiagnosed ExchangeThe Undiagnosed Exchange is a virtual, facilitated, small group intended to provide support and education for persons or caregivers going through a diagnostic odyssey. There is no fee associated with participating in this group. The facilitators have both been through...
July 2, 2026 Our volunteer-driven Community Councils have been busy. Check out their incredible progress. Support Council Update Thanks to an initiative from the Support Council, patients and families can nominate the medical providers who have made a real difference in their care. The highest-scoring nominees will be...
April 29, 2026 We invite you to our Undiagnosed Day 2026 on Wednesday, April 29th at 12:30 p..m. ET. The UDNF will celebrate Undiagnosed Day 2026 on April 29 with a virtual event to share knowledge, build community, and take action. It is time for us to have the...
We’re excited to welcome Danielle Carnival, Ph.D., as our new CEO of the UDNF! She brings not only deep expertise in science and policy, but a heartfelt commitment to listening, learning, and working with the rare and undiagnosed communities....
UDNF Statement on Rare Disease Day 2025 Cancellation, Research Funding, and Policy Impacts on the Ultra-Rare and Undiagnosed Community...
Read the December E-News HighlightsAdvancing Hope: A Year of Research Progress in Undiagnosed and Ultra-rare DiseasesUntil Rare is Not a Barrier: How Your Donation HelpsHelp Make the Impossible Possible...