NORD Announces Keynote Speakers for 2017 Rare Diseases and Orphan Products Breakthrough Summit

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Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.

The meeting, which takes place on an annual basis, brings together all stakeholders in the rare disease community, including patients and patient advocates, senior government officials, investors, academics and industry.

This year’s meeting will feature as keynote speakers parent advocate, award-winning journalist, and founder/CEO of The Mighty, Mike Porath; and newly-named Commissioner of the Food and Drug Administration, Dr. Scott Gottlieb.



Dr. Gottlieb was sworn in as Commissioner in May 2017.  He previously served as the FDA’s Deputy Commissioner for Medical and Scientific Affairs and before that, as a senior advisor to the FDA Commissioner. This is his first appearance at the NORD Summit. FDA Commissioners have spoken at all previous NORD Summits.

Mike Porath is the founder and CEO of The Mighty. He has held a variety of writing, editing, producing and executive roles at ABC News, NBC News, The New York Times and AOL. Porath also sits on the board of directors and chairs fundraising for The Dup15q Alliance, a non-profit patient organization that supports people with Dup15q syndrome, like his daughter.

The keynote speakers join an esteemed roster of experts that include leaders from FDA, including the Deputy Director for Science Operations of the Center for Drug Evaluation and Research, Richard Moscicki; the Director of the Center for Biologics Evaluation and Research, Peter Marks; and the Director of the Center for Devices and Radiological Health, Jeffrey Shuren. More than a dozen senior FDA officials are on the agenda.

This year’s program also features an expanded poster session for original research, innovations and advancements; greater one-to-one networking opportunities; and over two dozen roundtable discussions.

Peter L. Saltonstall, President and CEO of NORD, said: “As major changes to the nation’s healthcare system are debated, the NORD Summit will provide a unique opportunity to hear from the experts and engage in a dialogue on topics of concern and interest to the rare disease community.  The Summit connects our community and provides opportunities for enhanced communication and collaboration.”

A few highlight sessions include:

  • Ethical Guidelines for Patient Organizations and Industry to Collaborate
  • Assuring Patient Access: Future Outlook for Patient Assistance Programs
  • The Challenge of Healthcare Costs and Treatment Prices
  • An Evergreen and Sustainable Approach to Orphan Drugs
  • Right to Try, Current Policy News and NORD’s Policy Priorities
  • The Outlook for Investment in Orphan Products
  • Next Generation Treatments and Advancing Clinical Trials
  • The Power of Data-Sharing
  • Advancing Global Connection


About the National Organization for Rare Disorders

For more than 30 years, NORD, a 501(c)(3) independent organization, has been the nation’s voice on rare diseases and at the forefront of patient advocacy. NORD’s annual Breakthrough Summit is the largest multi-stakeholder gathering of the rare disease community.

For more information and to register, visit

Media Contact: 
Lisa Phelps
Director of Marketing and Community Relations
(203) 744-0100