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Undiagnosed Diseases Program

Overview

The Vanderbilt Undiagnosed Diseases Program exists to solve medical mysteries for patients with complicated conditions and rare diseases. Our goal is to provide answers and offer hope to adults and children whose symptoms have not led other health care providers to solutions. Our patients benefit from a team approach involving experts from across Vanderbilt University Medical Center.

Referrals to the Undiagnosed Diseases Program

Because evaluating a patient’s condition and finding answers takes significant time, we can only help a limited number of patients each year. A physician must contact us to begin the application process. Email us at vudp@vumc.org or call our program coordinator, Mary Koziura, at the number below.

Why Consider the Undiagnosed Diseases Program at Vanderbilt

Recognized care

In 2021, Vanderbilt University Medical Center was named a National Organization for Rare Disorders (NORD) Center of Excellence, joining an innovative network of 31 medical centers seeking to expand access and advance care and research for rare disease patients in the U.S. Our Undiagnosed Diseases Program is now part of this network, dedicated to the outstanding treatment of rare disease patients and collaboration to improve standards of care, advance research and increase awareness about rare diseases.

Leading research

Vanderbilt is one of 12 National Institutes of Health-funded sites in the Undiagnosed Disease Network (UDN). Ranking as one of the top 20 health systems in the country and among the top 10 recipients of federal research funds, VUMC brings together doctors and scientists who are leading experts in their fields. That expertise is vital to the Undiagnosed Diseases Program, which has a long history of solving difficult cases. We also offer state-of-the-art resources unique to VUMC.

Collaborative care

In addition to the Undiagnosed Disease Program team, experts from the following VUMC departments and centers may be involved in testing and evaluating patients: The departments of Pediatrics, Internal Medicine, Neurology, Pathology, Surgery, Radiology and Biostatistics; the Center for Precision Medicine; Vanderbilt Center for Structural Biology; and Vanderbilt Genetics Institute – all in all, more than 50 highly trained dedicated specialists and scientists.

Meet Your Care Team

Rizwan Hamid

Rizwan HamidMD, PhD, FAAP

    Dorothy O. Wells Professor of Pediatrics and Cancer Biology
Kevin W. Byram

Kevin W. ByramMD

    Assistant Professor of Medicine
Joy Cogan

Joy CoganPhD

    Professor of Pediatrics
John M. Fahrenholz

John M. FahrenholzMD

    Assistant Professor of Medicine
John H. Newman

John H. NewmanMD

    Elsa S. Hanigan Chair in Pulmonary Medicine
John Phillips III

John Phillips IIIMD

    David T. Karzon Professor of Pediatrics

Financial information

Insurance covers many services, such as lab tests and diagnostic imaging, that are a necessary part of diagnosing rare diseases. Vanderbilt contracts with many, but not all, insurance companies. If Vanderbilt contracts with the patient’s insurance company and the services are covered by the insurance policy, Vanderbilt will bill the insurance company for those services. We will work with your insurance company to get any “pre-authorizations” needed before you are seen and tests are run. Services not covered by insurance will be billed to the patient. Patients will also be charged an administrative fee for program costs not covered by insurance. We will discuss the anticipated costs with you before you make a decision about participation in the program. Following this, if there are certain services that your insurance company will not cover, we will notify you of the cost before you receive the service.