We are thrilled to share that we are partnering with the APBD Research Foundation (APBDRF) and the Association for Glycogen Storage Disease-UK (AGSD-UK) on a special APBD Patient Chat that aims to engage the global community.
With this unique Chat offering, the partnering organizations aim to engage APBD patients around the world. The Chat event allows for globally dispersed APBD patients to connect with each other and join a growing community of advocates who are committed to helping each other through their medical journey and supporting more research possibilities.
To register to attend: Registration Form – Virtual APBD International Patient Chat
If you have any questions, please email info@alextlc.org
This Chat offers APBD patients a safe and understanding space to:
– hear from Sarah Williams about her APBD journey and advocacy efforts
– connect with each other
– hear from each other regarding their common experiences, as well as the less common symptoms
– discuss work-arounds and tools to navigate unexpected challenges
– learn about the resources offered by the patient advocacy and research organizations
Sarah Williams, UK-based APBD patient and advocate shared, “Having APBD can be lonely, frustrating, and frightening. Until recently, I knew no one else with APBD, apart from my brother. I am so grateful for this special program to connect patients from around the world.”
Harriet Saxe, a member of the Foundation’s Board of Directors and volunteer moderator of the Patient Chats, shared, “Our work is driven by APBD patients and families who take bold steps to shift from living in isolation, to reaching out to others, to building a community, and joining forces for finding treatments and cures. I look forward to our conversations on June 25.”
