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.
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
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
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