Voice of the Patient 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).

Watch the Voice of the Patient Meeting held on February 12^th here:

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.

How to Get Involved

During this pivotal event, patients, families, and caregivers affected by DRD will have the opportunity to be heard by representatives from the FDA, product developers, practicing clinicians, and researchers. Participants will share 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 14th, 2026, we hosted a community webinar to introduce the upcoming Voice of the Patient Meeting, highlighting its purpose and how it supports the diabetes and DRD communities. If you’re interested in learning more about how you can participate and make your voice heard in shaping the future of diabetes-related eye care, watch the video below for all the details!

More Ways to Participate

Video and discussion starter slots are currently filled, but your voice is still needed!

There will be additional opportunities for the broader patient and caregiver community to share input as a part of the EL-PFDD meeting, including:

• Calling in during the virtual meeting
• Participating in polling questions during the virtual meeting
• Submitting written comments before, during, and after the meeting for inclusion in our Voice of the Patient report

We will provide more details in the coming months.

Together, we can ensure that the experiences, challenges, and hopes of people living with DRD are heard. Join us virtually on February 12, 2026, from 10 a.m. to 3 p.m. ET to be part of this powerful moment for our community.

If you have any questions, don’t hesitate to contact us at:
MTMVisionDRD-PFDDinfo@umich.edu