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

  • Read the March E-News Highlights Navigating Ultra-rare Diseases and How the UDNF Helps February Together on Tuesdays Wrap-up: What is a Patient Navigator? Upcoming Events...

  • Read the November E-News Highlights UDNF Live Online Event Update on Patient Navigation Program Sign Up for E-News Giving Tuesday is Coming Up Soon! Let’s Make the Impossible Possible...

  • April 29, 2024 The Undiagnosed Day, hosted by the Wilhelm Foundation, the Undiagnosed Diseases Network Foundation (UDNF), and Undiagnosed Diseases Network International (UDNI), will include presentations from Global experts highlighting the great work which is being done across the globe focusing on...

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

Troy Evans

I am Troy Evans. An undiagnosed male from Utah. I consider myself a “neuromuscular disease fighter” and that word, “fight” crosses my mind many times per day. As I’ll explain later, this unknown enemy has wiped out most of my leg muscles. It’s also allowed me to


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


Tammi Creed

When people meet our daughter Kaci, they politely ask, “What is her diagnosis?”. I always respond with “Well, that is a really good question that we do not have an answer to”. I then proceed to spew off some of her main challenges, such as