The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of the speakers confirmed for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit, to be held October 15th and 16th in Washington, D.C.
The NORD Rare Summit, which takes place on an annual basis, is the most innovative multi-stakeholder event of its kind, drawing together more than 700 participants from across the rare disease community to discuss the most current and urgent topics related to rare diseases and orphan products.
“A New Era of Patient-Focused Innovation” is the Summit’s 2018 theme, which will be examined from the perspectives of a diverse group of thought leaders. Scott Gottlieb, M.D., Commissioner of the FDA, will provide the Summit’s keynote speech. His will be joined by over 85 voices from the rare disease community, including:
- Christopher P. Austin, M.D. – Director, NIH National Center for Advancing Translational Sciences (NCATS)
- Tanisha Carino, Ph.D. – Executive Director, FasterCures
- Pushkal Garg, M.D. – Chief Medical Officer, Alnylam
- Richard Pazdur, M.D. – Director, FDA Oncology Center of Excellence
- Ashanthi De Silva – Rare Disease Editor, The Mighty, and the first gene therapy patient
- Shannon Resetich – Head of Rare Diseases for North America, Sanofi Genzyme
- Brendan Hayes – National Hemophilia Foundation
- Richard Engel – Correspondent, NBC News (providing video remarks)
These speakers will join the directors of FDA’s three medical centers, CDER, CBER and CDRH, as well as other leaders from NIH, patient groups, industry and academia. This year’s program also features an expanded poster session; one-to-one networking opportunities; six breakout sessions over two days; and over two dozen roundtable discussions.
Peter L. Saltonstall, President and CEO of NORD, said: “It is clear that the pace of innovation in rare diseases is accelerating. With innovation comes new challenges such as how patients will access these new treatments, whether payers will cover them and what role patients will play in future drug development. These are among the topics to be discussed at our Summit, which provides a unique opportunity to listen to cutting-edge speakers, network with peers, and hear directly from senior FDA staff about their current priorities.”
For a complete listing of the panel discussions, breakout sessions, lunch and learn groups, networking opportunities and the largest poster session to-date, the agenda can be found here. To register for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit, click here.
