2021 Virtual Rare Disease Symposium

Next-Generation Technology to Manage Rare Diseases

Friday, February 26

12:00 PM - 5:15 PM CST

The Friday session of the Symposium is catered to clinical care providers and scientists. Everyone is welcome to attend. This year's theme is Next Generation Technology to Manage Rare Diseases and includes a keynote address from Dr. David Fajgenbaum, national bestseller author of Chasing My Cure; sessions on telehealth during COVID19, racial disparities in rare disease management, and a parent panel. See the full agenda and registration information below.

Friday’s Agenda

12 PM - 12:30 PM - Recent Innovations in Genome Sequencing

• Gregory Cooper, Ph.D, HudsonAlpha Institute for Biotechnology

12:30 PM - 1 PM - Applying computational biology and data science methods to address needs in rare disease diagnosis and prognosis

• Elizabeth Worthey, Ph.D, University of Alabama at Birmingham

1:00 PM - 1:30 PM - Scalable Approaches to the Provision of Genetic Counseling

• Kelly East, MS, CGC, HudsonAlpha Institute for Biotechnology

1:30 - 1:45 - Break

1:45 PM - 2:15 PM - Telehealth, COVID, and Rare Disease

• Eric Wallace, M.D, University of Alabama at Birmingham

2:15 PM - 2:45 PM - Disparities in Rare Disease Management: An Urgent Matter to Address?

• Stephen Sodeke, Ph.D, Tuskegee University

2:45 PM - 3:15 PM - Parent Panel

• Moderator: Tammi Skelton, MSN, CRNP, NP-C

3:15 PM - 3:30 PM - Break

3:30 PM - 4:30 PM - Keynote - Personalized Medicine for Rare Diseases: Lessons learned from Chasing My Cure

• David Fajgenbaum, M.D., MBA, MSC, University of Pennsylvania

4:30 PM - 5:15 PM - Virtual Cocktail Party

• Hosted by the Alabama Rare Disease Advisory Council

  • Presentation of the Alabama Rare Disease Resource Manual