Making Diagnosis, Research & Treatments Possible for All

A world where no family with an undiagnosed or ultra-rare condition has to fight alone for a diagnosis, research, treatment or support.

The Latest News from the UDNF

  • The Undiagnosed Diseases Network Patient Engagement and Advocacy Resource (UDN PEER) and the Undiagnosed Diseases Network Foundation (UDNF) are integrating efforts to amplify the voice of patients and participants in the undiagnosed and ultra-rare disease communities. UDN PEER, a group of patients a...

  • We’re excited to announce that we’ll be hosting a live online event on Wednesday, December 6th at 3 pm eastern for all patients and families living with undiagnosed or ultra-rare diseases. UDNF: At the Intersection of Impossible Stories and Possible Solutions This will be the......

  • Dear Friends and Supporters: It is with great enthusiasm and a deep sense of purpose that I introduce to you our Strategic Plan for the years 2023 to 2025.  Our mission is clear: to improve access to diagnosis, research, and care for all individuals with......

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


Michele Herndon

From the age of 12, our son Mitchell lived each day knowing that an unknown disease was slowly robbing him of his hearing, leg movement and sensation, and his overall independence. He was receiving care from neurologists and specialists at one of the top pediatric


Luke Shantz

I prefer to start my story from the end, because who doesn’t like a happy ending. Right? Or at least an ending in which the bad guy doesn’t win. I enjoy life with my service dog Sophie, spending winters in tropical Colombia and summers on