The APBD Research Foundation is excited to partner with UK-based Alex The Leukodystrophy Charity (Alex TLC) and 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, we hope to engage APBD patients around the world so they can connect with each other and join a growing community of patients and advocates who are committed to helping each other through their medical journey and supporting more research possibilities.

To register for free, click here
Remember: The Chat will be conducted in English

This Chat offers APBD patients a safe and understanding space to:

– hear from Sarah 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

Our monthly APBD Patient Chats hosted by Harriet have been a life-line of support for 11+ years, and we’re excited about the possibilities offered by an international event.


“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 the APBD Research Foundation for its work creating a special program to connect patients from around the world.” 

                                                              – Sarah Williams | UK-based APBD Patient and Advocate

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 conversation on June 25.”

Related Articles:

Check out this video of Sarah sharing her lived experience during our 2022 Scientific and Community Conference

Read Sarah’s APBD journey that was featured in the recently published book Kaleidoscope: Rare Disease Stories by Kerry Wong