Rebecca Oberman became the first executive director of the Mucolipidosis Type IV (ML4) Foundation in 2012. Under her leadership the organization has transformed from a support group providing small seed research grants to an organization tightly focused on finding meaningful treatments for people with MLIV disease. In this short period of time, Rebecca has built an active patient community, established an international network of investigators working on MLIV, and facilitated discussions among stakeholders about priorities and possibilities for research and treatment. MLIV investigators at Massachusetts General Hospital (MGH) are currently developing a gene therapy for this disease and are conducting natural history research to support future trials.
In 2019, Rebecca joined MGH as a Clinical Research Program Manager, not only to advance MLIV research but also to work with several rare disease programs to enhance the collaboration between patient advocacy groups and the investigators working on these diseases. In this role, Rebecca works regularly with several ultra-rare patient groups and investigators, seeking to amplify the patient voice in all stages of research.
Rebecca has a BA from Vassar College, was a graduate fellow at Pembroke College, Cambridge, and holds a Ph.D. from the University of Washington.