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?

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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

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

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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

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Meghan Halley

Posted originally on Once Upon a Gene. Written by Effie Parks. I met Meghan Halley on the NORD Living Rare Living Stronger planning committee. She co-chairs the patient and family support group for the Undiagnosed Diseases Network. She’s a Stanford research scholar and a mom to

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