5 hours ago
Every year, World Retina Day shines a spotlight on the millions of people living with inherited retinal diseases and other retinal dystrophies. These conditions affect not only vision, but also independence, daily life, and emotional well-being.
On World Retina Day this year on 28th September 2025, Retina Australia is putting the spotlight where it truly belongs, on the voices of patients.
For many years, conversations around retinal health have been dominated by statistics, research advancements and clinical trials.
While those are vital, what is often missing is the patient perspective, the lived experience of navigating vision loss, managing treatments, and holding on to hope.

2025 theme: The Patient Voice
In alignment with the global movement driven by Retina International, the theme of World Retina Day 2025 is the “Patient Voice”. It is a reminder that the future of retinal healthcare must be shaped with patients, and not just for them. Their stories provide insights that no theory or trial ever could, and those insights can drive more meaningful innovation.
This theme was also central to many of the discussions at the recent Medicines Australia’s Medicines of Tomorrow – Horizon Scanning Forum 2025. Much of the conversation from the experts, highlighted the importance of patients being at the centre of discussions and developments, from research and policy to innovation and care.
Why Patient Voices Matter
When patients are heard, everything changes:
- Research becomes more relevant. Studies can focus on outcomes that truly impact quality of life, not just clinical metrics.
- Care becomes more compassionate. Providers gain a deeper understanding of what daily life with retinal disease really looks like.
- Policy becomes more equitable. Programs and systems are better designed to meet real-world needs.
Retinal diseases are deeply personal, and that is why personal experiences must be at the centre of change.
How You Can Be Involved this World Retina Day
Even without a podium, everyone can help raise a patient voice.
1. Talk about it
- Whether you are a patient, family member, caregiver, researcher, clinician, or simply someone who cares, you can start the conversation about your experience or connection with inherited retinal diseases or other retinal dystrophies.
- Share what you have learned with the hashtags #PatientVoice and #WorldRetinaDay and help break the silence and raise awareness around vision loss.
2. Listen to lived experiences
- Follow and share stories from people affected by retinal conditions.
- Take the time to read experiences shared on social media or blog posts and listen to interviews on patient perspectives. Use the hashtags #PatientVoice and #WorldRetinaDay to share and uplift these voices.
3. Support innovation that puts patients first
- Advocate for research, services, and support that are co-designed with patients. Demand a healthcare system that values lived experience as much as lab results.
4. Have your eyes checked
- Book in your next eye check. Take care of your vision and encourage others to do the same.
This is not just awareness, it is a global movement
World Retina Day is not only about recognising the challenges of retinal disease. It is about amplifying the strength, insight, and resilience of those living with it.
Because every time someone shares their story, they do more than raise awareness, they help reshape the future of retinal health.
Together we can shape policy and research that puts patients at the centre to accelerate innovations in retinal health.
- Retinal health begins with listening.
- Progress starts with understanding.
- And lasting change comes when we stand with patients, not just beside them.
Help us raise the Patient Voice this World Retina Day 2025
#PatientVoice #WorldRetinaDay #RetinaAustralia
The World Retina Day 2025 campaign is kindly sponsored by Specsavers
https://retinaaustralia.com.au/world-retina-day-2025/
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