Genetic Alliance hosted a webinar series, “What about Privacy and Progress in Whole Genome Sequencing?” I had the honor to participate on one of the panels last month on August 13th. As I shared our family’s story with whole genome sequencing and the answers it uncovered for Noah and Alexis, I shared my thoughts on needing this diagnostic tool to advance personalized medicine. I was joined on the panel by Pilar Ossorio and Ron Whitener, who represented different communities. As I shared my perspective on the community that I represent, over 7,000 rare diseases that affect over 300 million people worldwide, I pointed out the fact that for these patients, every day counts. This diagnostic tool needs to be available for those patients so that we can advance personalized medicine because every life matters.
