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

  • 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 ...

  • Read the April E-News Highlights Undiagnosed Day Events Rare Disease Day Wrap-Up Exciting News About UDN Funding...

  • Read the March E-News Highlights Navigating Ultra-rare Diseases and How the UDNF Helps February Together on Tuesdays Wrap-up: What is a Patient Navigator? Upcoming Events...

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

Sarah Marshall

Phoebe, now nearly 13 years old, was first evaluated by the UDN in April 2017. It’s been four years and, like for so many others, information has been slow in coming. The timeline is blurred in my memory in a way that is likely familiar


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


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