F. Sessions Cole, Secretary, UDNF and Professor of Pediatrics, Washington University School of Medicine, and Michele Herndon, MSN, RN and Program Director of UDNF’s Patient Navigation Program, discuss the Undiagnosed Diseases Network Foundation and their Patient Navigation Program.
Diagnostic Odyssey and Challenges
Diagnoses are key to understanding a patient’s disease and how to manage symptoms, or potentially treat the disease. They provide knowledge on prognosis and guidance into next steps for treatment. Genetic conditions also come with reproductive risk, something that a timely and accurate diagnosis can help inform. Additionally, a diagnosis can be an essential qualification to a patient receiving access to grants and programs that can help assist in their disease journey.
Patients with undiagnosed diseases face a set of unique challenges. The diagnostic odyssey of rare diseases can be lengthy, and continuous appointments and tests can be overwhelming. This mental and physical toll can consume the everyday lives of these patients and caregivers. Not having a diagnosis can also be an isolating experience caused by a lack of community and support. Resources for undiagnosed patients and caregivers can be difficult to obtain.
The Undiagnosed Diseases Network Foundation
The Undiagnosed Diseases Network Foundation (UDNF) functions with the goal of providing resources and support to those living with undiagnosed diseases and their families. By allowing a platform for collaboration amongst patients, caregivers, and the countless physician subspecialists they have seen, the UDNF helps move the diagnosis process along. Through their Patient Navigation Program, the organization provides resources and support that is holistic and individualized to each patient experience. Each patient that signs up gets matched with their own personal Patient Navigator who guides them throughout their journey. Aside from helping with the medical side of a diagnostic odyssey, this UDNF program can also provide resources surrounding topics such as mental health, food insecurity, and housing/utility payments.
For more information on rare diseases, visit https://checkrare.com/