Other Events

Foundation on the Road: Advocating for You and Learning from Peers at Key Stakeholder Meetings

October 30, 2024

The Foundation team represented our community in person and virtually at key stakeholder convenings across the country. Meetings attended included the Chelsea’s Hope Conference, Global Genes Week in Rare Conference, CombinedBrain, the US FDA’s Rare Disease Innovation Hub Public Meeting, CZI Science in Society Convening, the National Organization for Rare Disorders “Rare Summit,” and the n-Lorem Patient Colloquium.
Read More →

APBD Research Foundation’s Focus Group Brings APBD and GSD IV Communities Together for the First Time

May 6, 2024

On May 6, 2024, the APBD Research Foundation hosted a virtual Focus Group that brought together, for the first time, over 50 participants representing the Adult Polyglucosan Body Disease (APBD) and Glycogen Storage Disease Type IV (GSD IV) communities. The participants included patients, family members, patient advocacy organization leaders, clinicians, and researchers from 13 countries.
Read More →