http://www.retina-international.org/, https://linktr.ee/retina_int

Retina International, 12 Camden Row, Dublin 8, Dublin (2026)

23/06/2026

How do we measure what truly matters to people living with inherited retinal diseases?

Traditional clinical trial endpoints can tell us a great deal about vision, but they don't always capture how people experience their condition in everyday life.

That's why Retina International is delighted to organise an upcoming ARVO Special Interest Group (SIG) session exploring the role of Patient-Reported Outcome Measures (PROMs) in inherited retinal degenerations (IRDs) and their potential use as clinical trial endpoints.

Bringing together patient, clinical, research, and regulatory perspectives, the discussion will explore how patient experience data can help shape the future of retinal research, clinical trials, and decision-making.

Date: 25 June 2026
Time: 8:00–9:30 AM ET
Platform: Virtual
ARVO Fee: Members, Members-in-Training — $0, Nonmembers — $25

Link to register: https://www.arvo.org/meetings-events/special-interest-group

Organised by Dr Nabin Paudel, Retina International.

[ID: Promotional graphic for an ARVO SIG virtual session titled “What Matters Most to Patients? Patient-Reported Outcome Measures (PROMs) in Inherited Retinal Degenerations.” The graphic features speaker headshots of Avril Daly, Konrad Pesudovs, and Nabin Paudel (Organizer), along with event details: 25 June 2026, 8:00–9:30 AM ET, Virtual.]

17/06/2026

What a week!

From groundbreaking research and scientific updates to meaningful conversations, new collaborations, and moments of connection, United in Vision 2026 brought together the global retinal community in a truly special way.

Thank you to everyone who joined us in Fort Worth and to our partners at Foundation Fighting Blindness for helping create such an inspiring event. We're leaving with new ideas, renewed energy, and an even stronger commitment to ensuring that patient voices remain at the heart of retinal research, innovation, and advocacy.

Here's a look back at a few moments from an unforgettable few days.

[Video Description: Fast-paced montage from United in Vision 2026 in Fort Worth, Dallas, Texas. Clips show conference sessions, speakers on stage, attendees networking, audience discussions, and members of the global retinal community gathering throughout the event.]

15/06/2026

We’re pleased to share that RI team member, Dr Nabin Paudel, is organising an upcoming Special Interest Group (SIG) session at the Association for Research in Vision and Ophthalmology (ARVO) focused on an increasingly important topic in inherited retinal disease research:

Patient Reported Outcome Measures (PROMs) in Inherited Retinal Degenerations: Potential for Clinical Trial Endpoints

As retinal therapies continue to advance, understanding patient experience and measuring outcomes that truly reflect daily life and functional vision is becoming more important than ever.

The session will bring together patient, clinical, research, and regulatory perspectives, featuring presentations from our CEO Avril Daly and Prof. Konrad Pesudovs.

Date: June 25, 2026
Time: 8:00 - 9:30 AM ET
Location: Virtual

Link to register: https://www.arvo.org/meetings-events/special-interest-group

This session will explore why patient experience data matters, the current limitations of PROMs in inherited retinal degenerations, and the future role of patient-centred endpoints in clinical trials and regulatory decision-making.

[ID: Promotional graphic for an virtual session titled “Patient-Reported Outcome Measures (PROMs) in Inherited Retinal Degenerations: Potential for Clinical Trial Endpoints.” The graphic includes the session details: June 25, 2026, 8:00–9:30 AM ET, with Retina International branding and registration information.]

14/06/2026

As comes to a close, we'd like to extend a huge thank you to our hosts, Foundation Fighting Blindness, for delivering such a fantastic event.

It has been an incredible few days in Texas. We had the opportunity to meet and learn from so many members of the retina community from around the world, including from Retina Brasil, PRO RETINA Deutschland e. V., Retina NZ Inc., Retina Australia,Fighting Blindness, Retina South Africa, FARPE - FUNDALUCE, , Retina Norway (RP foreningen), Retina Iceland, and many more.

The conversations, insights, and shared experiences have been invaluable.

Hearing directly from people living with retinal conditions, their families, researchers, clinicians, and advocates has reinforced the importance of working together to improve outcomes and support for our global community.

We're leaving inspired, energised, and grateful for the connections.

David Sanchez Gonzalez
Manny Moodley
Jason Menzo
[ID 1: Retina International Board Members, Manny Moodley, David Sanchez, Franz Badura, Jeremy D'Souza, Jason Menzo.
ID 2: Avril Daly, Jason Menzo and Michel Michaelides on stage at United in Vision]

13/06/2026

We had a very busy day at in Fort Worth yesterday!

Our Director of Research, Patient Evidence and Programmes, Dr. Nabin Paudel, PhD, presented some early results from our multinational survey exploring the emotional and psychological well-being of people living with inherited retinal degenerations (IRDs).

This important work highlights the significant impact that IRDs can have on emotional well-being and quality of life, and, indeed, we heard lived experience throughout the day in presentations and Q&A sessions from the floor.

It was wonderful to present these early findings to such an engaged audience and contribute to the growing understanding of the lived experiences of people affected by IRDs.

Thank you to everyone who shared their experiences and helped to make these important conversations possible.

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

Foundation Fighting Blindness

12/06/2026

Kicking off Day 1 of United in Vision 2026 with a very special photo.

Pictured here are CEO Avril Daly, Head of Communications Claire Duggan, and Christina Fasser, former President of Retina International and one of the most influential patient advocates in the global retinal community.

For decades, Christina has been a driving force behind international collaboration, patient advocacy, research engagement, and progress across the retinal field. Her dedication has helped shape Retina International into the organisation it is today and has inspired countless advocates, researchers, and organisations around the world.

We're delighted to have so many familiar faces and friends from across the global retina community gathered together in Fort Worth this week.

And what better way to start the conference than with two generations of Retina International leadership in one frame?

Here's to a fantastic few days of science, collaboration, advocacy, and community at .

12/06/2026

A huge thank you to everyone who joined our Continuous Education Programme (CEP) yesterday at United in Vision 2026.

The session brought together patient leaders, researchers, industry representatives, and advocates for a thought-provoking discussion on the role of Patient Experience Data (PED) across the retinal research and development lifecycle.

Throughout the morning, speakers explored topics ranging from patient engagement legislation and health technology assessment to real-world registries, therapy development, and the co-design of meaningful endpoints. A common theme emerged across every presentation and discussion: research is stronger when patients are involved from the very beginning.

What made the session particularly special was the quality of the discussion. Participants shared valuable perspectives, challenged assumptions, raised important questions, and highlighted practical ways to ensure patient experience is meaningfully embedded in research, innovation, regulation, and decision-making.

We are incredibly grateful to our speakers, moderators, attendees, and partners at Foundation Fighting Blindness for helping create such an engaging and collaborative programme.

The conversations don't end here. The ideas, challenges, and opportunities discussed during the CEP will continue to shape how we work together to ensure that patient voices remain at the heart of retinal research and innovation.

Looking forward to another 2 days of such discussions and conversations! If you’re there, make sure to connect with our colleagues Avril Daly, Nabin Paudel and Claire Duggan on-ground!

Image 1:
Jason Menzo, CEO of the Foundation Fighting Blindness, leads an interactive discussion during the RI CEP at United in Vision 2026.

Image 2:
CEP participants engage in discussion and knowledge-sharing during the Q&A session led by Jason Menzo, CEO of the Foundation Fighting Blindness (FFB).

Image 3:
Dr Daniel Chung from Beacon Therapeutics presents on the importance of co-designing meaningful clinical trial endpoints with patients during the CEP.

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).]

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