Read the October E-News Highlights Undiagnosed. UIltra-rare. United. UDNF Community Events Heartfelt letters written by current and past UDNF PEER members...
Growing up Together: Recognizing and Supporting Siblings of the Undiagnosed & Ultra-rare Join us on Tuesday, November 12th at 12:00 p.m. Eastern Time as we explore the challenges siblings experience, from feeling overlooked to finding the balance between their own needs and those of their......
Read the September E-News Highlights Undiagnosed. UIltra-rare. United. UDNF Community Events Patient Navigator Program Highlights...
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
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
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
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
