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...
2025 was a big year for our family. For the previous 5 years, we were navigating an undiagnosed journey with our youngest child, Isla. Isla received many diagnoses in her first 2 months of life: microcephaly, hypotonia, global developmental delay, cortical visual impairment, all pointing...
Everything you need to lead a successful Expand Our Roots campaign as a Branch Leader is right here. Use the tools, tips, and graphics below to plan, promote, and drive your fundraiser. Branch Leader Toolkit Expand Our Roots Fundraising Page UDNF Talking Points UDNF Fundraising Tips Givebutter: How to Join...
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....
Introducing Indigo the Bunting: Your SongbirdIndigo the Bunting is a symbol created by and for the undiagnosed community. We know that for those of you still searching for answers—still navigating tests, specialists, symptoms that do not fit neatly into one box—it can feel incredibly isolating.Indigo...
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...
At UDNF, we're committed to transforming the lives of individuals affected by undiagnosed and ultra-rare diseases. Our research strategy prioritizes:Accelerated Diagnosis: Providing rapid and accurate diagnostic tools to ensure timely identification of these complex conditions.Innovative Research: Driving groundbreaking research to develop effective treatments and cures.Equitable...
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 ...