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 December E-News Highlights Advancing Hope: A Year of Research Progress in Undiagnosed and Ultra-rare Diseases Until Rare is Not a Barrier: How Your Donation Helps Help Make the Impossible Possible...

  • Read the November E-News Highlights Undiagnosed. Ultra-rare. United. UDNF Community Events 2024 Wrap-up The UDNF public statement for the FDA Rare Disease Innovation Hub Celebrating Cargivers Month with Jessica Patay from We Are Brave Together...

  • Research Webinar Join us for an engaging research webinar presented by the Undiagnosed Diseases Network (UDN) and the Undiagnosed Diseases Network Foundation (UDNF), where we will highlight progress in the field of undiagnosed and ultra-rare diseases. This webinar will showcase research advancements...

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

Sarah Marshall

Phoebe, now nearly 13 years old, was first evaluated by the UDN in April 2017. It’s been four years and, like for so many others, information has been slow in coming. The timeline is blurred in my memory in a way that is likely familiar

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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

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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

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