2023 RARE Advocacy Summit Live Stream

Watch Live September 19, 20, and 21, 2023

Thank you for watching the 2023 RARE Advocacy Summit!
The sessions listed below will be available on demand in October.

Key sessions, plenaries and sessions from Track 1: Empowering the RARE Individual & Legislative Action will be live streamed here throughout the conference, and may be watched on demand in October.

Sessions from Tracks 2, 3 and 4 will be available to view by clicking the links below:

Help rare disease organizations expand their reach and improve their effectiveness

Help patient advocacy groups develop and execute a research agenda to accelerate the development of therapies

Hear from drug development experts guiding rare disease advocates through the different therapeutic modalities

General Sessions Streaming Schedule

Welcome Remarks
Tuesday, September 19, 1-1:15pm PT / 4-4:15pm ET

Opening Keynote: We the Scientists: How Patients Are
Driving Research and Why It’s Necessary for Finding Cures
Tuesday, September 19, 1:15-2pm PT / 4:15-5pm ET

Day 1 Closing Plenary: Compelling New Models for Patient Engagement and Generated Patient Data
Tuesday, September 19, 5:15-6pm PT / 8:15-9pm ET

Champions of Hope – Winner Recognition and Celebration
Tuesday, September 19, 6-6:30pm PT / 9-9:30pm ET

Day 2 Welcome and Open Science Data Challenge
Wednesday, September 20, 8:30-9am PT / 11:30am-12pm ET

Day 2 Opening Plenary – Finding Your Flock: Emerging Opportunities to Accelerate Research Through Disease Community Collaborations
Wednesday, September 20, 9-9:45am PT / 12-12:45pm ET

Day 2 Closing Plenary: Strengthened by Our Past, Working Together to Create Our Future
Wednesday, September 20, 5-6pm PT / 8-9pm ET

Plenary Panel: It’s All of Us Against the Disease: The Future of Research Collaborations and Disease Community Consortiums
Thursday, September 21, 10-11am PT / 1-2pm ET

Closing Keynote: Rebel Health: How Rare Disease Communities Lead the Revolution
Thursday, September 21, 11am-12pm PT / 2-3pm ET

Closing Remarks
Thursday, September 21, 12-12:15pm PT / 3-3:15pm ET

Streaming Schedule for Track 1:
Empowering the RARE Individual & Legislative Action

Coordinating Complex Care
Tuesday, September 19, 2:15-3pm PT / 5:15-6pm ET

Pediatric to Adult Healthcare Transition:
The Rare Disease Experience
Tuesday, September 19, 3:15-4pm PT / 6:15-7pm ET

I’m an Expert, Too! Communicating with HCPs
Tuesday, September 19, 4:15-5pm PT / 7:15-8pm ET

Managing Life Without a Diagnosis
Wednesday, September 20, 10-10:45am PT / 1-1:45pm ET

Coping with the Challenge of Rare Disease – With or Without a Diagnosis
Wednesday, September 20, 11-11:45am PT / 2-2:45pm ET

Grieving Diagnosis, Lack of Diagnosis and Loss
Wednesday, September 20, 12-12:45pm PT / 3-3:45pm ET

Emerging Rare Policy Issues
Wednesday, September 20, 2 – 2:45pm PT / 5 – 5:45pm ET

The Cost of Delayed Diagnosis – After the
National Economic Burden of Rare Disease Study
Wednesday, September 20, 3-3:45pm PT / 6-6:45pm ET

Activating Advocacy for Kids, Teens, and Youth
Wednesday, September 20, 4-4:45pm PT / 7-7:45pm ET

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