UDNF Names Current Board Chair F. Sessions Cole, MD Acting CEO

WASHINGTON, D.C. (Nov. 9, 2026) The Undiagnosed Diseases Network Foundation (UDNF) has named F. Sessions Cole, MD acting Chief Executive Officer, effective today. Dr. Cole, who serves as Chair of the organization’s Board of Directors, succeeds Danielle Carnival, Ph.D., who is stepping down as CEO to pursue a new professional opportunity.

A renowned neonatologist and Emeritus Professor of Pediatrics at Washington University School of Medicine, Dr. Cole brings more than 25 years of leadership in rare disease research and a deep, firsthand understanding of the diagnostic odyssey that undiagnosed patients and their families must navigate. “It is a privilege to provide the leadership bridge needed to continue to accelerate the UDNF’s growth,” said Dr. Cole. “Having served as a board member for 3 years, I understand the needs of the families and undiagnosed individuals we serve, and I have witnessed their profound resilience. I remain deeply dedicated to easing the heavy burden of medical uncertainty that these individuals face every single day as undiagnosed patients.”

To support the transition, Dr. Carnival will remain with the Foundation as an advisor through the end of November. During this period, the board expects to appoint an interim CEO while launching a comprehensive national search for the organization’s next permanent leader.

The leadership transition follows a milestone year of programmatic expansion, policy advocacy, and funding momentum for the foundation. In 2026, the UDNF published the first-ever Undiagnosed Patients’ Bill of Rights and launched the Undiagnosed Champions program to mobilize grassroots support and celebrate advocates across the country. Additionally, the foundation’s Patient Navigation Program assisted more than 100 undiagnosed patients, its largest single-year cohort to date.

In 2026, the organization also significantly diversified its philanthropic funding. Alongside individual and corporate contributions, the UDNF was selected as a Patient Experience Partner for the Rare Disease AI/ML for Precision Integrated Diagnostics (RAPID) program, funded by the Advanced Research Projects Agency for Health (ARPA-H). The Foundation also secured crucial funding from the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health, awarded through the Undiagnosed Diseases Network’s Data Management Coordinating Center to expand patient navigation services.

Complementing these initiatives, the UDNF worked alongside community partners to champion federal bipartisan recognition designating April as Undiagnosed Disease Awareness Month and April 29th as Undiagnosed Day. Foundation advocates brought first-person patient narratives directly to more than 50 federal lawmakers and their staffs to secure sustained support for the Undiagnosed Diseases Network and advance clinical research aimed at shortening patients’ diagnostic odysseys, which currently average six to eight years for the estimated 30 million Americans living with rare and undiagnosed conditions.

About Undiagnosed Diseases Network Foundation

The Undiagnosed Diseases Network Foundation is a patient-led nonprofit organization founded in 2023 committed to improving access to diagnosis, research, and care for all with undiagnosed and ultra-rare diseases. The UDNF aims to foster collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients and their families. For more information, please visit www.udnf.org.

About Undiagnosed and Ultra-rare Diseases

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 (or 30 million people) in the U.S. Led by undiagnosed and ultra-rare patients and their families, the UDNF offers hope for healthcare that embraces the unknown and pursues clinical and research solutions for patient wellbeing.