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...
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...
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...