An Ally for the Undiagnosed Emerges

RARECast

The search for a diagnosis can take many years and requires going from doctor to doctor without finding a definitive answer for people with ultra-rare conditions, atypical presentations, or yet-to-be discovered diseases. A group of undiagnosed and ultra-rare diseases patients and their family members, medical providers, and advocacy partners launched the Undiagnosed Diseases Network Foundation to improve access to diagnosis, research, and care for people with undiagnosed diseases. We spoke to Amy Gray, CEO of the UDNF, about its work, its relationship with the National Institutes of Health-backed Undiagnosed Disease Network, and the organization’s top priorities.