August 31, 2026 UDNF to bring the voice and experiences of the undiagnosed community to a federal initiative aimed at transforming rare disease diagnosis. WASHINGTON, D.C. — August 31, 2026 — The Undiagnosed Diseases Network Foundation (UDNF) today announced it has been selected as a......
August 26, 2026 The Undiagnosed Diseases Network Foundation Unveils the Undiagnosed Patient Bill of Rights After years of navigating a healthcare system that too often left them without answers, without support, and without a voice — the undiagnosed community has spoken for itself. The Undiagnosed.....
August 26, 2026 The numbers are in — and they tell a powerful story about where Americans stand on one of medicine’s most overlooked challenges. Today, new data was released that showed Americans’ support for people living with undiagnosed diseases, but revealed a significant awareness......
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
