Q: What are the biggest needs for patients when they first receive an inherited retinal disease diagnosis?
For more on IRDs, start with Amanda Legge, OD's article "Digging in to Inherited Retinal Disease" from the October 2025 issue.
A: For many patients, the diagnosis itself can be incredibly overwhelming. Inherited retinal diseases are often rare, progressive, and unfamiliar, even to experienced eyecare professionals who may not encounter them frequently. When diagnosed, patients and families are suddenly faced with a flood of questions and anxiety about what comes next. Many patients even talk about experiencing grief as they begin to grapple with the possibility of vision loss, a gradual loss of independence, and the unknown.
I’ve learned that in these moments, the most critical needs are clarity, reassurance, and a sense of hope. At this stage, early access to genetic testing can provide answers and help patients better understand what they’re facing. It’s just as important to connect patients to clinical trials, research updates, and support networks because all of these resources help move them from uncertainty to empowerment. When patients understand that science is advancing and that they are not alone, it can fundamentally change their outlook and trajectory.
Q: How do these resources support optometrists and ophthalmologists in their practice?
A: Eyecare providers are often the first trusted source patients turn to after a diagnosis, so it’s important they have access to well-established resources that allow them to go beyond delivering difficult news. They need to be able to offer clear next steps and a path forward.
Through our Professional Outreach Program, we help eyecare professionals confidently guide patients after an initial diagnosis. We connect patients to local Foundation Chapters for peer support and education, referrals to low vision rehabilitation services and retinal specialists, no-cost genetic testing and counseling for inherited retinal diseases, and research tools like the My Retina Tracker Registry so patients can stay informed about ongoing studies and clinical trials. Referring patients to these trusted resources helps providers strengthen patient relationships and improve continuity of care. Too often, patients fall out of care after a diagnosis simply because they don’t know where to turn. Clear pathways help patients stay connected, informed, hopeful, and engaged in their own care.
Q: How does the Foundation's work in advocacy impact patients and providers?
A: Advocacy plays a critical role in sustaining progress in vision research. Continued federal investment in scientific research helps ensure that promising discoveries can move from the lab to the patients who need them most.
For patients, this means greater access to future treatments. For providers, it means a stronger research ecosystem that supports innovation and expands care options. At the Foundation, we work closely with policymakers, researchers, and clinicians to protect research funding and ensure that vision science remains a national priority.
Q: What’s next for the Foundation Fighting Blindness?
A: Over the next 5 years, our focus is on closing the gap between promising research and real treatments for patients. We know that scientific breakthroughs don’t help families unless they can move efficiently from the lab into clinical trials and, ultimately, into care.
Our Science Strategic Plan is designed around removing the biggest barriers to that translation. That includes establishing clinically meaningful endpoints so trials can better measure changes that matter to patients, investing in therapies for people with late-stage disease who currently have few options, and developing better disease models to accelerate progress across the field. We’re also prioritizing more inclusive genetic research so future treatments reflect the diversity of the communities affected by inherited retinal diseases.
We’re also investing in the next generation of scientists and expanding partnerships across academia, industry, and government. Progress at this scale requires collaboration, sustained funding, and shared accountability.
For patients and providers, the takeaway is that the pipeline is growing, the science is advancing, and the next phase of research is increasingly focused on delivering meaningful, measurable benefits. Our goal is to ensure that every patient has a clearer path forward with tangible progress. OM