Read the September E-News Highlights Undiagnosed. UIltra-rare. United. UDNF Community Events Patient Navigator Program Highlights...
Read the August E-News Highlights In this month’s e-news: Learn why obtaining a diagnosis is so challenging for those with medical mysteries, the UDNF participates at the NINDS Nonprofit Forum, and the announcement of our participation in the Librarey ambassador program....
Read the July E-News Highlights In this month’s e-news: The UDNF at the Bio International Convention, Patient Navigator Program highilights, and a mom’s story of balancing the needs of her healthy children while caring for her child with a chronic illness. ...
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
From the age of 12, our son Mitchell lived each day knowing that an unknown disease was slowly robbing him of his hearing, leg movement and sensation, and his overall independence. He was receiving care from neurologists and specialists at one of the top pediatric
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
