Michael Eging | Executive Director
Rare Access Action Project

Michael was first introduced to rare diseases while a student in college when his father was diagnosed with a rare form of cancer. As with many rare families, this experience launched him on an odyssey for answers. He began his career with Senator Orrin Hatch, Republican of Utah where he developed an affinity for domestic and international policy that enhanced patient access to therapies.  His advocacy work led to active participation and leadership in coalitions that focused on patient access to therapies across several therapeutic areas. In 2006, Michael began a focus on rare diseases particularly in oncology where he worked on state and federal issues keeping patients from accessing orphan medicines.  Since 2017, Michael has led the Rare Access Action Project (RAAP) a coalition of life sciences and patient community stakeholders advocating for patient access to rare disease therapies. He is active with policy makers in the federal and the state governments who oversee commercial payers and government policies that provide access to care.