2021 Summit Agenda

Please check back often as the agenda is subject to change.

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Monday, October 18, 2021 Tuesday, October 19, 2021

9:00am - 9:30am

Plenary – We Stand Together

9:35am - 10:05am

Plenary – Together We Are Strong: Best Practices and Case Studies for Successful Partnerships

10:10am - 10:55am

Plenary – Rare Diseases as a Public Health Challenge

10:55am - 11:10am

Networking Break

11:10am - 11:55am

Plenary – Impact of COVID-19 on Rare Disease Research, Clinical Trials and Drug Development

12:00pm - 12:45pm

Plenary – Designing Trials for Inclusivity, Equity and Engagement

12:45pm - 1:15pm

Lunch Break

1:15pm - 2:00pm

Plenary – Drug Pricing: State and Federal Perspectives

2:05pm - 2:50pm

Breakout Sessions

International Collaboration in the Rare Community
How Data Sciences are Being Used in Rare Disease Research and More Broadly in Health Care
Patient Organization Leadership Forum Session 1: Advanced Fundraising: Developing Your Business Proposition and Engaging Industry

2:50pm - 3:00pm

Networking Break

3:00pm - 3:45pm

Breakout Sessions

Healthcare System Savings with Genetic Testing
Community and Connectivity for Rare Disease Clinicians and Researchers
Decentralized Trials and Virtual Study Participation

9:00am - 9:45am

Plenary – FDA Patient Engagement

9:50am - 10:20am

Plenary – Messages for the NORD Summit Audience from Senior NIH and CDC Leaders

10:25am - 11:10am

Plenary – Gene Therapy and Gene Editing: Current Status and Potential Impact on the Rare Disease Community

11:10am - 11:25am

Networking Break

11:25am - 12:10pm

Plenary – NIH Town Hall

12:10pm - 12:45pm

Lunch Break

12:45pm - 1:30pm

Breakout Sessions

Advancing Rare Cancer Awareness and Education Among Healthcare Professionals
Health Technology and Patient-Generated Data

1:35pm - 2:20pm

Breakout Sessions

Patient Organization Leadership Forum Session 2 Building Bridges Across Silos: Coalitions and Partnerships
Challenges in Access to Genetic Testing for Rare Disease Patients

2:20pm - 2:35pm

FDA Commissioner Keynote

2:35pm - 2:50pm

Updates from FDA Center Directors

3:00pm - 3:45pm

Discussion Groups

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