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...
Read the November E-News HighlightsUndiagnosed. Ultra-rare. United. UDNF Community Events 2024 Wrap-upThe UDNF public statement for the FDA Rare Disease Innovation HubCelebrating Cargivers Month with Jessica Patay from We Are Brave Together...
Read the October E-News HighlightsUndiagnosed. UIltra-rare. United. UDNF Community EventsHeartfelt letters written by current and past UDNF PEER members...
Read the September E-News Highlights Undiagnosed. UIltra-rare. United. UDNF Community Events Patient Navigator Program Highlights ...
/*! elementor - v3.23.0 - 05-08-2024 */ .elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=".svg"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block} Read the August E-News HighlightsIn this month’s e-news: Learn why obtaining a diagnosis is so challenging for those with medical mysteries, the UDNF participates at the NINDS Nonprofit Forum, and the announcement of our participation in...
/*! elementor - v3.23.0 - 05-08-2024 */ .elementor-widget-image{text-align:center}.elementor-widget-image a{display:inline-block}.elementor-widget-image a img[src$=".svg"]{width:48px}.elementor-widget-image img{vertical-align:middle;display:inline-block} Read the July E-News HighlightsIn this month’s e-news: The UDNF at the Bio International Convention, Patient Navigator Program highilights, and a mom’s story of balancing the needs of her healthy children while caring for her child...