The 2023 U.S. Association for Glycogen Storage Disease conference in Orlando, Florida was held in late June, with strong GSD1b representation. Over 50 1b patients and family members from several countries attended the conference and there were several presentations on 1b-specific topics included in the conference lineup. Patients and caregivers were able to meet with many knowledgable GSD teams from various U.S. hospitals and research groups as well. Sophie’s Hope Foundation was on hand to spread awareness of type 1b and connect with patients and providers this year too!
The opportunity for patients and families to come together to learn, connect and support one another in-person is a truly remarkable experience for many. When asked what was most special about the conference, one caregiver said, “we can all agree there is no more comforting place than that with other 1b families. The connection we all have, despite any differences, is the most amazing feeling. To truly have someone understand your daily life struggles is incredibly relieving. The kids having instant bonds because they go through the same challenges– and have tubies and/or Dexcoms– is so fun to watch!”