WHAT'S HAPPENING
BREAKTHROUGH SUMMIT 2021: THE MOST IMPORTANT RARE DISEASE CONFERENCE OF THE YEAR
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
There are a select number of complimentary passes available to member organization leaders, Rare Action Network state leaders and medical professional students. To learn more, visit nordsummit.org.
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.
THE ARC'S NATIONAL CONVENTION : REGISTER TODAY
The Arc's National Convention is an unmatched opportunity to connect and learn with advocates, professionals, people with intellectual and developmental disabilities, and their families. If you are interested in employment, education, advocacy, housing, criminal justice, and more — our sessions are sure to challenge, inspire, and motivate! Visit convention.thearc.org
If you haven't registered for The Arc's upcoming National Convention in September, it's not too late — and, there are no travel arrangements required. While the Arc is sad not to be gathering in person, they continue to be dedicated to delivering an exceptional program that includes sessions on strategic crisis response, remote supports, mental health struggles, and diversity and inclusion. The event will be held on the same dates (September 27-29), now with updated pricing!
With the start of a new year approaching, there's no better time to reconnect, build on your knowledge and skills, and prepare for what lies ahead in the fight for disability rights.
| FULL EVENT | ONE DAY |
|---|---|
| Member: $315 | Member: $165 |
| Non-member: $435 | Non-member: $210 |
| Self-Advocate, Personal Care Attendant, Direct Support Professional: $195 | Self-Advocate, Personal Care Attendant, Direct Support Professional: $120 |