Improving access to diagnosis, research, and care for all with undiagnosed and ultra-rare diseases.

The Latest News from the UDNF

  • By Amy Gray | April 28, 2023 Washington, DC – The Undiagnosed Diseases Network Foundation (UDNF) joins forces with patient advocacy organizations around the globe to shine a light on undiagnosed diseases. Undiagnosed Day seeks to educate policy makers, researchers, and health professionals about the...

  • By Amy Gray | April 18, 2023 Washington, DC – Today, a team of patients with undiagnosed and ultra-rare diseases, their family members, medical providers, and advocacy partners announced the launch of the Undiagnosed Diseases Network Foundation (UDNF). The organization aims to improve access to dia...

  • By Adaline Dunnberg | March 7, 2023 Today, our friends at UDN PEER hosted a lecture titled “UDNF: Centering Patients in Diagnosis, Research, and Care” featuring the organization’s founding board members. Watch the interview conducted by Sarah Marshall, UDN PEER Co-chair, to meet...

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


Undiagnosed Patient and Family Stories

Phoebe Marshall

For a lot of my childhood, I was really hopeful that my doctors were going to figure out a diagnosis that would miraculously explain everything that was going on with me. I was young and didn’t understand much about the world around me but what


Meghan Halley

Posted originally on Once Upon a Gene. Written by Effie Parks. I met Meghan Halley on the NORD Living Rare Living Stronger planning committee. She co-chairs the patient and family support group for the Undiagnosed Diseases Network. She’s a Stanford research scholar and a mom to


Kelley Coleman

Finding Connection While Undiagnosed Having an undiagnosed child with a disability leaves our family with many unanswered questions. What doctors specialize in our child’s care? How do we learn more about his condition? How do we map his future when there are no other maps