Improving the Diagnostic Odyssey for Rare Disease Patients


Linda Goler Blount, MPH
Black Women’s Health Imperative, President and CEO

Nelly Ganesan, MPH
Avalere, Principal

Matthew Might, Ph.D.
University of Alabama-Birmingham, Hugh Kaul Precision Medicine Institute, Professor, Department of Medicine Director

Stephen Kingsmore, M.D., DSc
Rady’s Children’s Institute, President and CEO

Experts and Analysts

Aaron Goldenberg, Ph.D., MPH
Center for Genetic Research Ethics and Law at Case Western Reserve University School of Medicine, Associate Director

Brendan C. Lanpher, M.D.
Mayo Clinic, Clinical Geneticist

Holly K. Tabor, Ph.D.
Stanford University Department of Medicine, Associate Professor of Epidemiology and Population Health


Christopher P. Austin, M.D.
National Institutes of Health’s National Center for Advancing Health Translational Sciences, Former Director; Flagship Engineering, CEO-Partner

Dan Kastner, M.D., Ph.D.
National Human Genome Research Institute, Scientific Director

Anne R. Pariser, M.D.
National Center for Advancing Translational Sciences, Office of Rare Diseases Research Director


Matt Eyles, M.S.
America’s Health Insurance Plans (AHIP), President and CEO

E. Gay Grossman
Neurogene, Inc., Director of Patient Engagement;, Co-Founder

Danny Miller
MEPAN Foundation, CEO; Illumina Rare and Undiagnosed Genetic Diseases, Patient Ambassador

Julia Jenkins, MA
EveryLife Foundation for Rare Diseases, Executive Director

Rachel Sher, J.D., MPH
National Organization for Rare Disorders, Vice President, Regulatory and Government Affairs

Marshall Summar, M.D.
Children’s National Rare Disease Institute, Director

Grace Whiting, J.D.
National Alliance for Caregiving, President and Chief Executive Officer

Return to main event »