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


NORD’s Welcome & Summit Preview

Peter L. Saltonstall, President and Chief Executive Officer, NORD 

9:00am - 9:30am

Plenary – Patient/Caregiver Keynote

9:30am - 10:00am

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

10:00am - 10:45am

Plenary – Rare Diseases as a Public Health Challenge

10:45am - 11:00am

Networking Break

11:00am - 11:45am

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

11:45am - 12:30pm

Designing Trials for Inclusivity, Equity and Engagement

12:30pm - 1:00pm

Lunch Break

1:00pm - 1:45pm

Plenary – NIH Town Hall

1:45pm - 2:30pm

Plenary – Drug Pricing: State and Federal Perspectives

2:30pm - 2:45pm

Networking Break

2:45pm - 3:30pm

Breakout Sessions

International Collaboration in the Rare Community
Orphan Product Investment in a Post-COVID World
Patient Organization Leadership Forum Session 1 Advanced Fundraising: Developing Your Business Proposition and Engaging Industry

3:30pm - 4:15pm

Breakout Sessions

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

4:15pm - 4:30pm

Day 1 Wrap-up & Day 2 Preview

9:00am - 9:45am

Plenary – FDA Patient Engagement

9:45am - 10:30am

Plenary – Messages for the Community from Key Federal Officials

10:30am - 10:45am

Networking Break

10:45am - 11:30am

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

11:30am - 12:15pm

Breakout Sessions

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

12:15pm - 12:45pm

Lunch Break

12:45pm - 1:30pm

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

1:30pm - 1:45pm

Networking Break

1:45pm - 2:30pm

FDA Commissioner Keynote

2:30pm - 2:45pm

Updates from FDA Center Directors

2:45pm - 3:30pm

Discussion Groups

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