Have You Experienced Vision Changes with Your APBD Diagnosis?: Consider Joining the Vision Loss and APBD Focus Group
October 14, 2026
The APBD Research Foundation is preparing to host a Vision Loss and APBD Focus Group to convene later this fall. This group will bring together APBD patients who have experienced or are experiencing changes to their vision, caregivers, and clinicians in a 1.5 hour session to learn about lived experiences with vision-related symptoms and begin to understand how vision loss is associated with APBD.
Historically, vision changes have been considered a unique or rare symptom among APBD patients. However, a 2024 publication describing the neuro-ophthalmic changes – or brain driven changes in vision, as opposed to changes in the eye itself – seen in several APBD patients has increased interest in this APBD-related symptom. Recent discussions in our community have shown that upwards of 10% of APBD patients may be impacted by vision changes as part of their diagnosis. This new information has shifted our perspective to see vision loss or impairment as a more common, yet under-reported in the literature, symptom experienced by APBD patients.
Are you or a loved one experiencing vision changes that may be related to APBD?
Contact the APBDRF Research Director, Lindsay Gill, PhD, at lindsay@apbdrf.org to learn more about the Vision Loss and APBD Focus Group..
