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-scori...
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......
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....
What the UDN offers patients like myself extends far beyond the obvious search for diagnosis and treatment. It offers a far more elusive gift; one that we struggle at times to find, and at other times to hang on to. One that we frequently abandon when caught in the throes of nihilistic despair.
It offers HOPE.
– Ingrid Kovitch, UDN Participant
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
Our first son Carson was born in 2011, and our diagnostic odyssey began just a few months later when we began to notice that his developmental milestones weren’t quite tracking with other kids his age. His movements seemed stiff and jerky, and he had trouble
As parents, all we want is for our kids to be happy and healthy. Unfortunately, that is not always how things turn out. My name is Mayra and I have three beautiful children. My oldest is 18, my middle child is 14, and my baby
