In the spring of 2023, Sophie’s Hope Foundation and CureGSD1b started organizing and facilitating monthly support group calls for GSD1b patients and caregivers. The calls have been well-attended, with patients and families from several continents, many countries, and various age groups represented. Topics have ranged from specific challenges faced by certain demographic groups, to broader issues impacting all patients and caregivers like mental health. So far feedback has been excellent and the goal is to continue providing a place and platform for 1b families to share their experiences with others around the globe.
Calls take place at various times throughout the month– some on weekends and others on week days– to accommodate as many people as possible. The next call takes place on August 26th at 9am pacific standard time, noon eastern standard time, 6pm central European time. The topic for this call will be Back to school: resources and topics for school and daycare. Our topics and dates have also been lined up for the fall, so be sure to mark your calendars! If you would like to participate, please email firstname.lastname@example.org to receive a calendar invitation and google meeting link. Also be sure that you are signed up for the Patient Contact Registry to receive email reminders for the call each month to not miss out!