The National Keratoconus Foundation recently led one of the largest patient-centered research initiatives ever undertaken in keratoconus. Through a nationwide survey developed by researchers at the Gavin Herbert Eye Institute at the University of California, Irvine, thousands of individuals with keratoconus and their caregivers shared their experiences to help improve understanding of the disease beyond what can be learned in the clinic alone. The project explored every stage of the patient journey, including diagnosis, treatment, quality of life, emotional wellbeing, access to care, and communication with eye care providers.

This fall, findings from this research will be shared with the eye care community at Academy 2026 Anaheim, the annual meeting of the American Academy of Optometry (AAO). The poster, Emotional Wellbeing, Psychosocial Burden, and Support Needs in Keratoconus, examines an important part of the keratoconus experience that may not be apparent through clinical examination or vision testing alone: how the condition affects patients emotionally and psychologically.

The poster will be presented on Thursday, October 1, 2026 from 4:30-6:30 PM, by NKCF Assistant Director Taylor Young, BA, a fourth-year optometry student, with co-authors NKCF Director Amy Hellem, PhD, FAAO, and Clearly KC Podcast host Melissa Barnett, OD, FAAO, FSLS, FBCLA.

For NKCF, this is an important opportunity to bring the voices and experiences shared by the keratoconus community directly to the clinicians who care for them.