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2020 NORD Summit to Feature Leading Experts in Public Policy, Patient Advocacy, Rare Disease Research and Regulatory Science

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Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases and Orphan Products Breakthrough Summit, taking place virtually October 8-9. 

“With our community deeply affected by COVID-19, important policy issues at a critical point, and scientific innovation advancing more rapidly than at any time in history, it is essential for the community to come together virtually to share perspectives and address time-sensitive topics,” said NORD President and CEO Peter L. Saltonstall. “At the NORD Summit, we will tackle the issues that matter most to the community at this unique moment and hear directly from leading experts on the front lines of public policy, medical research, patient advocacy and regulatory science.” 

The 2020 NORD Summit will feature a dynamic roster of advocates, thought leaders and subject matter experts. Sessions include: 

  • Congresswoman Robin Kelly (IL-02) together with representatives from the US Department of Health and Human Services, the New Hampshire State Legislature, the University of Minnesota and the Rare Action Network on “Telehealth and Rare Diseases” 
  • Peter Marks, MD, Director of the Center for Biologics Evaluation and Research, and Patrizia Cavazzoni, MD, Deputy Director of the Center for Drug Evaluation and Research, at the US Food and Drug Administration (FDA) with “An Update from FDA Centers” 
  • Patient advocates, industry leaders and the director of the Center for Innovation in Global Health on “International Perspectives on Innovation, Affordability and Creating a Sustainable Healthcare System” 
  • Two parallel panels—one from NIH and one from FDA—on “Changing the Clinical Development Paradigm” and “Entering a New Era in Regulatory Science” 

The annual NORD Summit is the largest multi-stakeholder event of its kind held in the United States, with participants spanning the global rare disease community and connecting to discuss the most current and critical topics related to rare diseases and orphan products. 

This year’s theme, “Entering a New Era, refers to the current climate of innovation in rare disease research, evolving regulatory science and the need to address global public health challenges. Throughout the Summit, the focus will be on maintaining and advancing innovation while addressing current challenges.   

Top sponsors of the 2020 NORD Summit includEversana, Insmed, Retrophin and Takeda. For a complete listing of speakers, topics, sponsors and more, as well as to register for the event visit NORDSummit.org. 

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