2026 Agenda at a Glance

Thursday, July 9

Family Advisory Working Groups  1:00-4:00pm (pre-registered only) 
First time Attendee Welcome Session  4:30pm
Conference Opening and Welcome Dinner  5:30pm
Family Break-Out Sessions  6:45 – 7:30pm

Friday, July 10

Conference Sessions 9:30 am – 5:00 pm
    – Translational and Clinical Updates
    – Parent’s Perspective on Transition to Adulthood Guardianship, and Planning
    – Looking Beyond the Misconceptions of Palliative Care
    – Accessing and Advocating for Niemann-Pick Treatment Coverage
Dinner on Your Own
Family Fun Night  7:00 – 9:00 pm

Saturday, July 11

Conference Sessions 9:00 am – 5:00 pm
    – Global Partner Perspective
    – Family Breakout Sessions
    – Newborn Screening Updates
    – Experts Panel
Gala Dinner 6:00pm – 10:00 pm