Keynote speakers announced for 2016 Rare Diseases and Orphan Products Breakthrough Summit
Approximately 300 million Americans live with rare diseases. NORD represents these patients as the top independent nonprofit organization in the U.S.
Dr. Robert Califf, commissioner of the U.S. Food and Drug Administration (FDA), is scheduled to present a keynote address on the first day of the summit. His talk will highlight the priorities of the FDA and how the organization plans to prepare for future generations of medical advances.
Kristen Gray, cofounder of CureBatten.org -- also called the Charlotte and Gwenyth Gray Foundation -- and a member of NORD, is scheduled to speak, as well. In 2015, her children were diagnosed with Batten disease, a fatal brain disorder. Her presentation will explain her family’s experience with the disease as they searched for options.
Kate Rawson, a senior editor at Prevision Policy LLC, will give an address about national election implications and how these will affect the rare disease community. Rawson has almost 20 years of experience with health care industries regulated by the FDA, typically related to biotechnology and pharmaceuticals. She regularly writes about FDA regulation, health care policy and reimbursement coverage.