2021 Summit Agenda

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

Looking to download the detailed agenda? Please submit the Event Interest form.

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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