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

  • July 11, 2024 We invite you to our next UDNF Tell Me More Lecture Series on Thursday, July 11th  at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. Are you an undiagnosed patient......

  • Read the May E-News Highlights For Mother’s Day, we wanted to honor and recognize moms who are facing the unknown. We asked moms in our UDNF community to share how living with an undiagnosed or ultra-rare disease has shaped their journey through motherhood. Inside this......

  • April 29, 2024 Post Event Update On April 29th, 2024, the Wilhelm Foundation, the Undiagnosed Diseases Network Foundation (UDNF), and Undiagnosed Diseases Network International (UDNI), hosted the Undiagnosed Day 2024 Event at Harvard Medical School. Presentations from Global experts highlighted the ...

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

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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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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Kelley Coleman

Finding Connection While Undiagnosed Having an undiagnosed child with a disability leaves our family with many unanswered questions. What doctors specialize in our child’s care? How do we learn more about his condition? How do we map his future when there are no other maps

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