Amy Gray, Chief Executive Officer of the Undiagnosed Diseases Network Foundation (UDNF), discusses the organization and what they do for patients of undiagnosed rare diseases.
As Ms. Gray explains, the journey to a diagnosis can be a long and difficult journey for rare disease patients, taking an average of 5 to 7 years. The UDNF aims to help ultra rare disease and undiagnosed patients by providing access to research, diagnosis, and care. The organization has begun implementation of innovative research approaches, such as working with external data sources, as well as AI technology to better aggregate information for these patients.
A vital program at UDNF is their Patient Navigation Program which pairs up families with an advisor. This advisor helps tailor the patient journey to each family by providing resources and connections to help with diagnostics and medical care.
The majority of patients currently enrolled in the UDNF are pediatric patients with genetic conditions. However, the organization is hoping to expand their patient population to adults and people with non-genetic conditions.
To learn more about the Patient Navigation Program, check out our interview with the program director, Michele Herndon, MSN, RN, at https://checkrare.com/the-undiagnosed-diseases-network-foundation/
Undiagnosed Diseases Network Foundation