We’re excited to announce that we’ll be hosting a live online event on Tuesday, February 6th at 12:00 pm eastern for all patients and families living with undiagnosed or ultra-rare diseases. The focus of the meeting will be Patient Navigation at the UDNF: Meet the......
The Undiagnosed Diseases Network Patient Engagement and Advocacy Resource (UDN PEER) and the Undiagnosed Diseases Network Foundation (UDNF) are integrating efforts to amplify the voice of patients and participants in the undiagnosed and ultra-rare disease communities. UDN PEER, a group of patients a...
We’re excited to announce that we’ll be hosting a live online event on Wednesday, December 6th at 3 pm eastern for all patients and families living with undiagnosed or ultra-rare diseases. UDNF: At the Intersection of Impossible Stories and Possible Solutions This will be the......
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
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
I am Troy Evans. An undiagnosed male from Utah. I consider myself a “neuromuscular disease fighter” and that word, “fight” crosses my mind many times per day. As I’ll explain later, this unknown enemy has wiped out most of my leg muscles. It’s also allowed me to
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
