Deanna Portero joined the NCATS Office of Rare Diseases Research as a management analyst in May 2019. She supports the planning, management and coordination of gene therapy and gene editing initiatives, including the $180 million NIH Common Fund Somatic Cell Genome Editing program.
Prior to joining NCATS, Portero was the executive director of the Fibrous Dysplasia Foundation, a patient advocacy organization for the rare bone disease community. Her responsibilities included board development, advisory board management, program management, legislative affairs, fundraising and general administration. Portero developed a number of strategic partnerships during her tenure as executive director, including co-chairing the EveryLife Foundation Public Policy Working Group, awarding approximately $500 thousand in seed grants with the Orphan Disease Center at the University of Pennsylvania, launching the fibrous dysplasia/McCune-Albright syndrome Patient Registry with the National Organization for Rare Disorders, developing innovative patient conferences with Global Genes and leading governance development for a newly founded international consortium.
Portero entered the field of rare disease advocacy and research through roles at the National Organization for Rare Disorders, where she contributed project management and strategic analysis to a diverse set of initiatives.
Portero attended Dartmouth College, where she majored in philosophy and minored in psychology, with a focus on the empirical study of moral decision-making processes. She also holds a Project Management Professional certification from the Project Management Institute.
Portero is interested in novel and disruptive models of collaboration in the rare disease field. She is particularly interested in collaborative models that leverage the urgency and expertise that can be found in every rare disease community.