Suzanne Thornton organizes an event in which three HGP members share meaningful stories of significant events in their lives. Today we hear from Dave Gray, Margie Adams, and Jules Elias.
Rare diseases are those that affect fewer than 200,000 Americans at any given time. Nearly 7,000 such diseases are known today, many of them targeting children. Dr. Susan Hayflick has dedicated her research to finding a cure for neurodegeneration with brain iron accumulation (NBIA), a group of rare, genetic neurological disorders. She will discuss the science that many of these diseases share and the social and economic challenges that patients face. Dr. Hayflick is chair of OHSU’s Department of Molecular & Medical Genetics. The Hayflick Lab, in collaboration with national and international partners, is credited with discovering five genes that cause NBIA thus furthering our understanding of neurodegenerative pathogenesis.