WASHINGTON, Oct. 23, 2019 /PRNewswire/ -- Earlier this week, the National Organization for Rare DisordersⓇ (NORD) broke previous records with its 2019 Rare Diseases & Orphan Products Breakthrough Summit, welcoming over 900 registrants to two days of unforgettable keynotes, powerful panels, breakout sessions and networking in Washington, DC.
The NORD Summit is the largest and most innovative multi-stakeholder event of its kind, drawing together participants from across the rare disease community—including patient advocacy groups, government, industry and academia—to discuss the most current and urgent topics related to rare diseases and orphan products. The 2019 theme focused on why "The Time is Now" to drive innovation, collaboration, advocacy and research. These topics included perspectives from a diverse group of thought leaders.
The 2019 Summit kicked off the morning of Monday, October 21 with a greeting from NORD's President and CEO, Peter L. Saltonstall, followed by an emotional Patient/Caregiver Opening Address, "There is No Time Like the Present - Inspiration to Action." Speakers Terry Jo Bichell and Karen Aiach are mothers and rare disease warriors whose stories illustrated how families impacted by rare diseases are helping to drive progress in research, an increased understanding of diseases and the development of treatments.
Keynote speeches were informative and inspiring, with speakers including CDER's Associate Director for Strategic Initiatives, Theresa Mullin, PhD and FDA Acting Director Ned Sharpless, MD. Tuesday morning marked an impassioned keynote speech delivered by Health and Human Services Secretary Alex Azar, the highest ranking government official ever to speak at a NORD Summit.
"Effective treatments are often hard to come by, requiring years of expensive maintenance therapies. When successful therapies are developed, they're not cheap. We need to ensure that Americans who suffer from rare diseases have ways to finance their care--while also making sure that our financing system can support innovation toward the cures we need," said Secretary Azar.
Other highlights from the Summit included panels featuring key opinion leaders, an NIH conversation on why it is a unique moment for rare disease research, a town hall with the three FDA Center Directors and an interactive dialogue with FDA senior staff.
Sponsors of the 2019 NORD Summit included Sanofi Genzyme, Eversana, Insmed, Retrophin and Takeda. To register for the 2020 NORD Summit, happening next October 8-9 at the Marriott Wardman Park in Washington, DC, click here. For more general information, 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 the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 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 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 is made strong together with over 275 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)
