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....
The UDNF is proud to introduce Indigo the Bunting, 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...
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...
Research Webinar Join us for an engaging research webinar presented by the Undiagnosed Diseases Network (UDN) and the Undiagnosed Diseases Network Foundation (UDNF), where we will highlight progress in the field of undiagnosed and ultra-rare diseases. This webinar will showcase research advancements, including case studies on...
Read the October E-News HighlightsUndiagnosed. UIltra-rare. United. UDNF Community EventsHeartfelt letters written by current and past UDNF PEER members...
Growing up Together: Recognizing and Supporting Siblings of the Undiagnosed & Ultra-rare Join us on Tuesday, November 12th at 12:00 p.m. Eastern Time as we explore the challenges siblings experience, from feeling overlooked to finding the balance between their own needs and those of their brother...