Voice of the Patient Meeting On Vision Loss From Diabetes
Thursday, February 12, 2026 10:00 AM to 3:00 PM EST
*Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting on Diabetic Retinal Disease (DRD)
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.
Join the Conversation: Diabetic Retinal Disease (DRD) Patient & Caregiver Voices Needed!
The Mary Tyler Moore Vision Initiative warmly welcomes patients with DRD, their caregivers, and families to register for its virtual EL-PFDD on DRD, which will be streamed live on February 12, 2026. This meeting will highlight the lived experience of DRD to help shape the future care and treatment of DRD.
Get Involved: Help Shape the Future of DRD Care
We need you! If you are living with DRD or care for someone who has or had DRD, your experiences are crucial. By sharing your story, you’ll help:
Inform the FDA about what matters most in DRD.
Change the trajectory of care for patients living with this debilitating disease.
Influence the development of better treatments and strategies for DRD.
About the Live Webinar
When
February 12, 2026
Where
Virtual – Join from anywhere!
What
Listen, share, and learn through panel discussions, audience polling, and live Q&A.
Why
Your voice can guide the creation of safer, more effective DRD treatments.
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
Additionally, to provide the public with more information about the event and answer any questions, MTM Vision will be hosting a virtual community webinar on January 14th, 2026, from 1:00 p.m. to 2:00 p.m. ET. All are welcome to attend and learn how to get involved.
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 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
I realized that if I spoke out, I might be able to help others better cope and manage their diabetes.”
— — Mary Tyler Moore
Submit Your Comments Early
Submit a comment below on the topics we will be discussing in advance of the EL-PFDD meeting. Comments should be submitted individually.
Topic 1 – DRD Symptoms & Daily Impact
Of all the health effects of DRD, which 1-3 symptoms have the most significant impact on you or your loved one’s life?
How does DRD affect you or your loved one on best and on worst days?
How have your or your loved one’s symptoms changed over time?
How has the ability to cope with the symptoms changed over time?
Are there specific activities that are important to you or your loved one that you/they cannot do at all or as fully because of DRD? What do you fear the most as you or your loved one gets older?
What worries you most about you or your loved one’s condition?
Topic 2 – Current & Future DRD Treatments
What are you currently doing to manage your or your loved one’s DRD?
How well do these treatments treat the most significant symptoms and health effects of DRD?
What are the most significant downsides to your or your loved one’s current treatments and how do they affect daily life?
Short of a complete cure, what specific things would you or your loved one look for in an ideal treatment for DRD?
What factors would be important in deciding whether to participate in a new research trial?
Thank You to Our Sponsors
EL-PFDD Meeting Agenda
February 12, 2026
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