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
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
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
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
