Symposium, Scientific Meeting and Research Roundtable

The 8th International Symposium and Scientific Meeting on Alagille Syndrome is the largest gathering of ALGS families, researchers and industry professionals in the world.

We thank our families and all of our ALGS stakeholders for attending this important event! Take a look below to see how we worked to Connect the Pieces!

“The Alagille Syndrome Alliance is the hub that brings together researchers, clinicians, industry partners, and—most importantly—patients and families. The International Symposium was a beautiful illustration of the work they do, which is to bring the latest research to the patient community. I’m continually impressed by Roberta and Cher’s tireless efforts to push the research forward.” Ron Cooper, President & CEO of Albireo Pharma

Quick Links:

• Scientific Meeting Overview
• Research Roundtable Survey Results
• Research Roundtable Recordings
  • Welcome and Goals for the Research Roundtable (Video)
  • Family Presentations, Family Survey Results (Video)
  • Scientific Meeting Overview, Investigator Perspectives, Working Group Questions #1 (Video)
  • Working Group Questions #2 (Video)
  • Working Group Summaries and Findings (Video)
• Research Roundtable White Paper  (coming soon)
• Symposium Presentations
  • Where We Were, Where We Are, Where We’re Going, David A. Piccoli, MD (Video)
    • Slides
  • ALGS Expert Panel (Video)
  • ALGS Genetically Speaking, Nancy B. Spinner, Ph.D. (Video)
    • Slides
  • GALA Program, Binita Kamath, MD (Video)
  • Clinical Trials – Drug Development, Pam Vig, Ph.D. (Video)
    • Slides
  • Caring for the Caregiver (Video)
  • Teen and Young Adult Panel (Video)
  • School Age Concerns, Chanda Turner & Ryan Woodside (Video)
    • Slides
  • IEPs and 405s – How, What and Why (Video)
  • Clues from Mouse Kidney Studies, Kamesh Surendren, Ph.D. (Video)
  • Building a Support System (Video)
  • CoRDS Registry, Alyssa Mendel (Video)
    • Slides
    • Join the CoRDS ALGS Patient Registry Scroll to the bottom and click “Get Registered.” Once completed, the screening form will provide you with a log in to the Alagille Syndrome Registry.
  • Why Supporting Advocacy is Important, Kendall Davis (Video)
  • Nutrition and Cholestatic Liver Disease, Kathleen Loomes, MD (Video)
  • Celebration Dinner and Presentation of 2019 Champion Awards (Video)
  • Keynote Speaker – Bruce Friedman, Team Telomere (Video)
    • Slides
• Scientific Meeting and Symposium Photo Album – Album LINK

Questions? Please contact alagille@alagille.org