April 29, 2024 The Undiagnosed Day, hosted by the Wilhelm Foundation, the Undiagnosed Diseases Network Foundation (UDNF), and Undiagnosed Diseases Network International (UDNI), will include presentations from Global experts highlighting the great work which is being done across the globe focusing on...
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
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
Like so many in the Rare and Undiagnosed Disease community, my story begins with… surprise. For some it was an unexpected pregnancy complication. For others, a missed milestone, some insidious decline, or a dramatic medical crisis. And in the blink of an eye our hopes
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
