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.

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What is an undiagnosed disease?

How can I get a diagnosis?

Where do I find 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

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Undiagnosed Patient and Family Stories

Danny Miller

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

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Christin Siscoe

Aldis Hodge was recently quoted as saying, “What makes a superhero? They’re supposed to represent hope, opportunity, and strength for everybody.” As a mom, I find this statement a true reflection on my Cooper and every UDN participant. Our journey began shortly after Cooper was

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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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