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
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
For a lot of my childhood, I was really hopeful that my doctors were going to figure out a diagnosis that would miraculously explain everything that was going on with me. I was young and didn’t understand much about the world around me but what
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
