August 27, 2021 – Registration is now open for the NORD Rare Diseases and Orphan Products Breakthrough Summit®. The NORD Summit, one of the largest global events in rare disease, brings together experts and leaders from patient advocacy groups, government, industry, and academia to discuss the current and critical topics in rare diseases and orphan products.
Key learnings announced include Designing Trials for Inclusivity, Equity and Engagement, which will focus on what’s being done and what needs to be done to increase inclusivity, equity, and engagement in clinical trials, as well as a session highlighting Project Baby Bear as a case study into how one state (California) demonstrated healthcare system savings through access to genetic testing.
Expert speakers announced include:
- John Whyte, MD, Chief Medical Officer, WebMD
- Michelle McMurry-Heath, MD, PhD, President & CEO, Biotechnology Innovation Organization (BIO)
- Phillip L. Pearl, MD, Director, Epilepsy and Clinical Neurophysiology, Boston Children’s Hospital; William G. Lennox Chair of Neurology, Harvard Medical School; President, Child Neurology Society; Member, NORD Board of Directors
- RADM Richardae Araojo, PharmD, MS, Associate Commissioner for Minority Health, US Food and Drug Administration (FDA)
- Quita Highsmith, Vice President and Chief Diversity Officer, Genentech
- Brian Maienschein, Assemblyman, 77th District, State of California
- Patrizia Cavazzoni, MD, Director FDA Center for Drug Evaluation and Research (CDER)
- Peter Marks, MD, PhD, Director FDA Center for Biologics Evaluation and Research (CBER)
- Jeffrey Shuren, MD, JD, Director, FDA Center for Devices and Radiological Health (CDRH)
- David Dimmock, MD, Chief Medical Officer, Rady Children’s Institute
This event is free and open to press. To register as a member of the press, please contact Rohan Narayanan at rnarayanan@rarediseases.org
Free passes are also available for non-press participants. To learn more, visit nordsummit.org.
About 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 in the United States. 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. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 330 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.