Voice of the Patient Meeting on Vision Loss from Diabetes*

The Voice of the Patient Meeting, formally known as the Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting, was held on February 12, 2026. This Meeting empowered individuals living with vision loss from diabetes or fear of it, as well as their families and caregivers, to share real-life experiences directly with the FDA and other important stakeholders, including product developers, clinicians, and researchers. Here is your opportunity to add your voice. Your input is essential in showing the urgent need for better treatments and support for people with Diabetic Retinal Disease (DRD)

You can watch the full meeting recording here:

AGENDA

Thank you to all the patients and caregivers who submitted comments for inclusion in our Voice of the Patient Report. It will be completed Fall 2026 and will be available here.

Request a Copy of Report

What Are Externally-Led Patient-Focused Drug Development (EL-PFDD) Meetings?

Externally-Led Patient-Focused Drug Development (EL-PFDD) meetings are special gatherings created to bring the real-world experiences and voices of patients and caregivers directly to the center of decision-making about new treatments and research.

Established by the U.S. Food and Drug Administration (FDA), the Patient-Focused Drug Development (PFDD) initiative aims to ensure the concerns, needs, and priorities of people living with serious medical conditions—like Diabetic Retinal Disease (DRD)—are understood by FDA, product developers, clinicians, and academic researchers and used to guide the development and evaluation of new therapies.

Externally-led simply means that a patient advocacy group (like The Mary Tyler Moore Vision Initiative), rather than the FDA itself, hosts the meeting. These meetings typically follow a format designed by the FDA and present an opportunity for the patient community to share:

• Experiences living with or caring for someone with the disease.
• Symptoms and daily impacts that matter the most.
• Services, treatments, or other approaches that have helped—or not.
• Hopes and priorities for future research and better treatments.

After each EL-PFDD meeting, these insights are gathered into a “Voice of the Patient” report that is shared with the FDA, product developers, clinicians, and academic researchers. The goal is to make sure the people whose lives are affected by a disease have a clear and lasting impact on how new therapies are developed and evaluated.

These meetings empower patients, their caregivers, and families, and help the whole community—including clinicians, industry, and policy makers—better understand what truly matters to those living with the condition.

Event Recap: Voice of the Patient Meeting

During this pivotal event, patients, families, and caregivers affected by DRD had the opportunity to be heard by representatives from the FDA, product developers, practicing clinicians, and researchers. Participants shared how DRD impacts daily life and treatment journeys through several avenues:

• Recorded videos and testimonials highlighting lived experiences
• Live “discussion starter” sessions featuring patients and caregivers
• Interactive participation, including live call-ins, comment submissions, and polling

On January 14, 2026, we hosted a community webinar introducing the Voice of the Patient Meeting—its purpose and how it supports the diabetes and DRD communities. If you’d like to learn more about the goals of the meeting and how patient and caregiver input helps shape the future of diabetes-related eye care, you can watch the webinar recording below.