2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

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Washington, D.C., August 29, 2018 – 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 15-16 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.”

Sponsors of the 2018 NORD Rare Summit include Sanofi Genzyme, Retrophin, Shire and Dohmen. For a complete listing of the panel discussions, breakout sessions, lunch and learn groups, networking opportunities and the largest poster session to-date, download the agenda. To register for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit, click here.


About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 270 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.