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

WASHINGTON, Sept. 10, 2020 /PRNewswire/ -- 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 include Eversana, 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.  

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 more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children.

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 over 37 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 is made strong together with more than 325 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community. Visit rarediseases.org.          

SOURCE National Organization for Rare Disorders (NORD)

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