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 June E-News A Note from the Editor In our June Newsletter we are excited to highlight the UDN Site at University of Alabama at Birmingham (UAB). We welcome you to read articles from Bruce Korf, the Principal Investigator, Kaitlin Callaway, and Tammi Skelton,......

  • August 22, 2024 We invite you to our book launch of Everything No One Tells You About Parenting a Disabled Child: Your Guide to the Essential Systems, Services, and Supports on Thursday, August 22nd  at 12:00 p..m. ET. Everything No One Tells You About Parenting a Disabled Child:...

  • September 3, 2024 We invite you to our next UDNF Together on Tuesdays series on Tuesday, September 3rd  at 12:00 p..m. ET for What is Palliative Care, REALLY?  What is Palliative Care REALLY? What is palliative care, REALLY? Hospice care? Concurrent care? Too often, these......

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

Research

Undiagnosed Patient and Family Stories

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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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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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

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