RARE Daily

UDNF Launches Patient Navigation Program for Undiagnosed and Ultra-Rare Disease Patients

February 7, 2024

Rare Daily Staff

The Undiagnosed Diseases Network Foundation said it has launched its Patient Navigation Program to connect undiagnosed or ultra-rare disease patients and their families to services and care experts who can guide them through the healthcare system.

The Patient Navigation Program is backed with a $2.5 million grant from the Chan Zuckerberg Initiative.

The search for a diagnosis for an undiagnosed or ultra-rare disease can be long and difficult. Patients may go from doctor to doctor without answers, and they may face treatment delays, lack of access to specialists, invasive and costly tests, emotional distress, and longing for community. There are more than 10,000 known rare diseases that affect about 1 in 10 people.

“Seeking a diagnosis for undiagnosed or ultra-rare diseases, especially while managing chronic symptoms, can be incredibly confusing and time-consuming,” said Amy Gray, CEO of UDNF. “Our Patient Navigation Program aims to reduce much of this burden by providing our services to the people and families who most need them.”

The Patient Navigation Program supports patients both within the clinical sites of the Undiagnosed Diseases Network and the broader community beginning with Baylor College of Medicine in Houston, Texas, and Washington University Medical Center in St. Louis, Missouri.

People currently living with or caring for those with an undiagnosed or ultra-rare disease nationwide can apply on the UDNF website. The program continues to expand to new sites throughout the country, the organization said.

Photo: Amy Gray, CEO of UDNF


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