Marybeth McAfee

Marybeth McAfee, MA is trained as a genetic counselor but has spent the last part of her career in non-clinical roles, helping rare disease patients find specialists and information for their disease, managing rare disease information websites, and empowering rare disease patient organizations to become involved in therapy development pathway. Marybeth joined the National Organization for Rare Disorders (NORD) in 2021 to work closely with Edward Neilan, MD, PhD, NORD Chief Medical and Scientific Officer, to launch the NORD Rare Disease Centers of Excellence Program.

Prior to NORD, Marybeth worked for the Genetic and Rare Disease Information Center (GARD), a program of the NIH National Center of Translational Sciences (NCATS). Marybeth also has a background in benchtop research, having studied with Louis Kunkel, PhD and Cynthia C. Morton, PhD at Harvard Graduate School of Arts and Sciences while attaining her master’s degree.