Retina International

08/06/2026

Just 2 days to go until United in Vision 2026!

We're looking forward to joining patients, families, researchers, clinicians, advocates, industry partners, and member organisations from around the world in Fort Worth for three full days of learning, discussion, and connection.

Alongside the main conference programme, Retina International will also host its Continuous Education Programme (CEP) for members and invited guests on the 11th June, bringing together patient leaders and experts to explore the role of patient experience throughout the retinal research and innovation lifecycle.

Whether you're attending for the science, the community, the advocacy, or the conversations in between, we can't wait to see you there.

Safe travels to everyone making their way to Texas this week! Our CEO, Avril Daly, Head of Communications, Claire Duggan and Director of Research, Nabin Paudel, will be travelling from the team. If you’re there, feel free to reach out to them to connect!



[ID: Countdown graphic for Retina International’s United in Vision 2026 conference, highlighting that there are 2 days to go until the event. The graphic includes the conference dates, 11–13 June, the location, Omni Fort Worth, Dallas, Texas, and Retina International branding.]

06/06/2026

Last week, we brought the fifth Retina International Education Hub programme to a close.

Over six months, participants from across our global network came together to explore retinal diseases, genetics, clinical trials, artificial intelligence, patient registries, regulation, innovation, mental health, advocacy, and the critical role of the patient voice in research and decision-making.

What began as an educational programme became much more than that. It became a space for learning, discussion, collaboration, and connection between patient advocates, researchers, clinicians, and experts from around the world.

We are incredibly grateful to our outstanding faculty for sharing their expertise so generously, and to our participants for bringing curiosity, insight, and enthusiasm to every session. Your questions, experiences, and perspectives enriched every conversation.

One of the goals of the Education Hub was to empower people living with retinal conditions and those who advocate alongside them to engage confidently in research, policy, and innovation. The feedback we have received has reaffirmed just how important these opportunities for learning and connection are.

As with previous years, the programme does not end with the final session. We will now work through the feedback received from both participants and faculty to help shape and strengthen the next Education Hub programme.

To everyone who contributed to making this year's programme such a success: thank you. We are immensely proud of what we achieved together and excited about what comes next.

Applications for the next Education Hub cohort will open in the autumn, watch this space!

05/06/2026

A proud moment for Retina International at EURORDIS-Rare Diseases Europe .

Yesterday, our Head of Communications, Claire Duggan, presented the preliminary findings from our multinational survey on the emotional and psychological wellbeing of people living with inherited retinal degenerations (IRDs).

Drawing on responses from participants across seven countries, the study highlights what our community has been telling us for years: the impact of IRDs extends far beyond vision loss alone. It affects mental wellbeing, independence, relationships, employment, and quality of life.

Importantly, this research is about turning lived experience into evidence that can help shape future clinical trials, inform policy, improve services, and ensure patient priorities are reflected in decision-making.

A huge thank you to everyone who contributed to this work and joined the discussion!

Study authors: Dr Nabin Paudel, Dr Ellen Moran, Avril Daly, and Prof. Lauren Ayton AM (Centre for Eye Research Australia).



[ID: Claire Duggan, Head of Communications at Retina International, delivers a poster pitch presentation at ECRD 2026 on findings from a multinational survey exploring the emotional and psychological wellbeing of people living with inherited retinal degenerations (IRDs).]

25/05/2026

We're looking forward to sharing our work at in Prague!

Our poster, "Emotional and Psychological Wellbeing in People Living with Inherited Retinal Degenerations (IRDs): Results of a Multinational Survey", will be presented by Claire Duggan, our Head of Communications, during the Day 2 Poster Pitch Session on Thursday, 4th June.

This work explores an aspect of inherited retinal diseases that is often under-recognised: the emotional and psychological impact of living with progressive vision loss. By gathering perspectives from people living with IRDs across multiple countries, the study aims to better understand how vision loss affects well-being, independence, relationships, and everyday life.

Date: Thursday, 4 June 2026
Time: Approx. 11:35 CET
Location: Room B2+3 at O2 Universum Congress Centre

If you're attending , we'd love to connect and discuss the findings!

Study authors: Dr Nabin Paudel; Dr Ellen Moran; Avril Daly; Prof. Lauren Ayton AM, Centre for Eye Research Australia (CERA)

EURORDIS-Rare Diseases Europe



[ID: Promotional graphic for highlighting a poster presentation titled “Emotional and Psychological Wellbeing in People Living with Inherited Retinal Degenerations (IRDs): Results of a Multinational Survey.” The graphic includes the poster pitch session details: 4 June 2026, 11:35 CET, Room B2+3, with Retina International branding and the message “See You There!”]

23/05/2026

A gentle reminder to take part in our Retina International website redevelopment survey!

We’re currently working on building a more accessible, user-friendly, and community-focused website, and whether you’re a patient, family member, researcher, clinician, advocate, or member organisation, we would love to hear from you.

Your insights will help us improve accessibility, strengthen how we share information and resources, and create a website that better reflects the needs of the global retinal community.

Survey link: https://docs.google.com/forms/d/e/1FAIpQLSc2FcDtO6wLMDh7KgkR26Az1OdaqrYhbIPkEa8ujTX1VEcWbg/viewform

Thank you to everyone who has already shared feedback with us so far!

22/05/2026

A big thank you to Claire Wilmington, a PhD student at University College Cork and a member of the Retorna_EU group, for delivering a fascinating presentation to the team on her PhD research exploring patient preferences around gene therapy for retinal diseases.

Claire is currently undertaking a short placement with Retina International, where she is working closely with patients to help co-design her research methodology while also gaining insight into RI’s research, advocacy, and policy work.

It’s fantastic to see patient perspectives being embedded so thoughtfully into retinal research from the very beginning, and we’re delighted to support Claire during her placement with us!



[Image description: Rl team members seated together, listening to a presentation by Claire Wilmington on her doctoral research exploring patient preferences regarding gene therapy for retinal diseases.]

21/05/2026

Another inspiring session of the Education Hub!

This week’s module focused on Innovation in Retina Disease Diagnosis and Treatment, exploring some of the latest developments shaping the future of retinal research and care.

A huge thank you to Dr Kapil Bharti for his session on stem cell therapy for inherited and age-related retinal diseases, including mechanisms of action and current clinical trials, and to Dr Joe Carroll for sharing insights into innovative imaging modalities in inherited and age-related retinal disease.

We’re also incredibly grateful to all participants for their engagement, thoughtful questions, and continued enthusiasm throughout the programme.

At Retina International, the Education Hub was developed to empower patient advocates with deeper knowledge of retinal science, clinical trials, innovation, regulation, and the future of retinal care, thereby strengthening patient leadership and ensuring that lived experience remains central to research and decision-making.

We now look forward to our final Education Hub knowledge-sharing and closing session on May 29th from 12:30 PM to 2:00 PM CET.



[Image descriptions: 1 - Faculty introduction graphic featuring Dr Kapil Bharti and Dr Joe Carroll, with their names, academic affiliations, and the Retina International Education Hub logo. 2 - Online Retina International Education Hub session showing a presentation slide by Dr Kapil Bharti titled “Stem Cell therapy - for inherited and age-related retinal diseases - mechanism of action, current trials,” alongside participant video thumbnails. 3 - Online Retina International Education Hub lecture slide by Dr Joe Carroll titled “Innovative Imaging Modalities in Inherited and Age-Related Retinal Diseases,” featuring participant video thumbnails and the AOIP (Advanced Ocular Imaging Program) logo.]

18/05/2026

We’re delighted to officially welcome Navya Dhir to Retina International as our new Membership Engagement Coordinator!

Navya brings experience across member communications, community engagement, and international network building, and will play an important role in strengthening how Retina International connects and engages with members across our global network.

As our communications work continues to grow alongside the redevelopment of the RI website, Navya will also serve as the primary point of contact for membership-related queries and support.

We’re excited to have her on board and look forward to the work ahead together!

Read more here: https://retina-international.org/navya-welcome/

📩 Membership queries: [email protected]
📩 Contact Navya directly: [email protected]

17/05/2026

As conversations around vision loss and mental wellbeing continue to grow, we’re pleased to share this upcoming webinar from Foundation Fighting Blindness for Mental Health Awareness Month.

At Retina International, this is an area we are also actively exploring through ongoing research into the wider impact of vision loss on mental health, cognitive wellbeing, and quality of life, making conversations like these especially important.

“Mental Health Living and Thriving” will explore emotional resilience, holistic wellbeing, and navigating life with vision loss, led by licensed therapist Matthew Reeves, who also lives with Stargardt disease himself.

Date: Saturday, May 23rd, 2026
Time: 12:00 PM EDT
Location: Virtual

A valuable conversation for the blind and low vision community, families, advocates, and anyone interested in the connection between eye health and mental wellbeing.

Register here: https://www.fightingblindness.org/events/quarterly-vision-webinar-mental-health-living-and-thriving-6840

Join us for our Quarterly Vision Webinar on Mental Health, in honor of Mental Health Awareness Month, on Saturday, May 23, at 12:00 p.m. ET. We’ll explore the emotional impact of vision loss, along with strategies for resilience, holistic well-being, and building community.

15/05/2026

A look back at a busy and inspiring few days at ARVO Annual Meeting 2026!

From presentations and poster sessions to conversations with researchers, clinicians, and advocates from around the world, ARVO 2026 brought together the global ophthalmology and vision research community to share the latest developments shaping the future of eye health and retinal research.

We were proud to have Dr Kate Fankun Cao representing Retina International and presenting important research exploring the wider impact of vision loss on mental health and cognitive wellbeing using data from The Irish Longitudinal Study on Ageing - TILDA.

Thank you to everyone who stopped by, connected, and shared conversations with us throughout the week in Denver.



[Video Description: A montage of clips from the ARVO 2026 Annual Meeting in Denver, Colorado. The video opens with 3 stacked clips of the Colorado Convention Centre and ARVO signage before moving through scenes of busy conference halls, presentation rooms, poster sessions, and networking spaces. Researchers and attendees are seen speaking at podiums, presenting scientific posters, and engaging in discussions throughout the venue. A few clips show Retina International researcher Dr Kate Fankun Cao presenting her research. The video captures the atmosphere of a large international scientific conference focused on ophthalmology, retinal research, and eye health.]