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

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

Mayra Ramos

As parents, all we want is for our kids to be happy and healthy. Unfortunately, that is not always how things turn out. My name is Mayra and I have three beautiful children. My oldest is 18, my middle child is 14, and my baby

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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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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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