Retina International

14/03/2026

New Podcast Episode!

In this special joint episode of Canal Retina Asociación Retina Murcia and Perspectives Podcast (Retina International), recorded in Dublin, we explore the global fight against inherited retinal degenerations (IRDs) and age-related retinal diseases, and look ahead to the United in Vision conference, which is uniting two prestigious events, the Foundation Fighting Blindness VISIONS conference and the Retina International World Congress, into one extraordinary global gathering.

Host David Sanchez is joined by:

• Avril Daly, CEO of Retina International

• Jason Menzo, President & CEO of Foundation Fighting Blindness

Together they discuss:
- The upcoming United in Visions conference ( https://www.fightingblindness.org/visions-2026 )
- Why genetic diagnosis matters for IRDs (with 350+ genes involved)
- How research and clinical trials translate into real impact for patients
- The importance of global collaboration across patients, clinicians, researchers, policymakers, and industry
- The lived experience of vision loss and the need for independence, support, and access to care

📅 12–13 June 2026
📍 Fort Worth, Texas

Listen now and join the conversation shaping the future of retinal research and patient care.

🔴 https://youtu.be/ELC2TyEFG-I

Also available on Spotify, Apple and wherever you get your podcasts! Search 'Retina International' or 'Canal Retina'.



Video description: In this special joint episode of Canal Retina and Perspectives Podcast, recorded in Dublin, we talk about the global fight against inherited retinal degenerations (IRDs) and age-related retinal diseases – and invite you to United in Vision - the Retina International World Congress 2026 in Fort Worth, Texas.

Host David Sanchez is joined in conversation by Avril Daly – CEO, Retina International and Jason Menzo – President & CEO, Foundation Fighting Blindness (FFB).

05/03/2026

It was a pleasure to join the conversation at the IPHA Annual Conference 2026 [Steering Through Disruption] at the yesterday.

Our CEO, Avril Daly, participated in the panel “Competitiveness for Equity: Shaping Europe’s Health Agenda under Ireland’s EU Presidency.” The panel also included perspectives from Edward James-Smith, Muiris O'Connor, Sibilia Quilici, and Olaf Weppner.

The discussion highlighted how strengthening Europe’s competitiveness in research, innovation, and medicines development must go hand in hand with improving equitable access for patients.

For the retinal disease community, this conversation matters. Advancing policies that support innovation, clinical trials, and sustainable access to therapies is essential to ensure that people living with inherited retinal diseases and other retinal conditions are not left behind.

We're grateful to contribute the patient perspective to this important dialogue and look forward to continuing the conversation on how Europe can deliver both competitiveness and equity in health.

Jennifer Carroll MacNeill TD

04/03/2026

We’re delighted to share that our wonderful colleague Dr Kate Fankun Cao has been selected for an oral paper presentation at the 2026 ARVO (Association for Research in Vision and Ophthalmology) Annual Meeting.

Her presentation, “Association between visual acuity and cognitive performance: Evidence from The Irish Longitudinal Study on Ageing (TILDA)”, will take place on May 5, 2026, as part of the session Functional assessment and outcomes for low vision.

📍 Paper Presentation #2931
🕒 2:30–2:45 PM (Session 339, Room 403)

This is an important contribution to understanding the links between vision and cognitive health in ageing populations. We’re incredibly proud to see Kate’s work recognised on this global stage.

We look forward to sharing more details as ARVO 2026 approaches!



The Irish Longitudinal Study on Ageing - TILDA

03/03/2026

We were deeply saddened to learn of the passing of Mike Smith, former President of Retina New Zealand Inc.

On behalf of everyone at Retina International, we extend our heartfelt condolences to his family, friends, and colleagues at Retina NZ.

Mike was a true champion for the low vision community, whose leadership, encouragement, and unwavering belief in your work inspired so many. His passion and dedication will continue to resonate through the lives he touched and the progress he helped advance.

May his legacy continue to inspire and guide the community he so passionately supported.

It is with deep sadness that we share the passing of Mike Smith - ex-President of Retina NZ, champion indoor bowls player, and an all-round incredible guy. We will ensure that his passion for the low vision community continues to live on through the work we do.

Kua hinga te tōtara o Te Waonui a Tāne
- A mighty member of the community who has passed from this life to the next.

02/03/2026

Retina South Africa is proud to share a powerful new podcast from Retina International, recorded for Rare Disease Day 2026, highlighting the work of Act4RED — a collaborative initiative that includes Retina International, ERN‑EYE, Foundation Fighting Blindness, and the Ocular Diseases Forum. Act4RED brings together patients, clinicians, and researchers to transform diagnosis, care, and innovation for rare eye diseases.

The mission is clear: Stop the Loss of Vision by driving coordinated policy action, advancing research, and ensuring that patient needs remain central to all decision‑making.

In this special episode, Avril Daly speaks with leading experts — Prof. Hélène Dollfus, Prof. Bart Leroy, and Prof. David Keegan — as they unpack why rare eye diseases remain underdiagnosed and underfunded, and what must change to ensure better outcomes for patients around the world.

🎧 Listen to the podcast here:
👉https://bit.ly/3NdGUbj

At Retina SA, we continue to advocate for earlier diagnosis, equitable access to care, and research that brings hope to those living with inherited retinal and rare eye diseases.

16/02/2026

Our colleague, Dr Ellen Moran, will be representing Retina International at the Mapping Rare webinar marking Rare Disease Day 2026.

Organised by Rare Diseases International, the session will highlight Mapping Rare projects from across the global rare disease community, sharing practical examples of how community-led initiatives are helping make rare diseases more visible.

🗓️ 17 February 2026
🕒 3 - 4 pm CET
📲 Register: https://lnkd.in/db8HRPtj

The webinar will be held in English, with live Spanish interpretation and multilingual captions.

27/01/2026

We’re hiring! Membership Engagement Coordinator (Full-time).

Retina International is recruiting a Member Engagement Coordinator to play a key role in delivering our strategic goals.

This is an exciting opportunity to join a fast-moving, global patient-led organisation and work closely with our international member network.

📍 Dublin (Hybrid)
- One-year full-time contract, competitive salary
- Global role supporting 40+ member organisations
- 35 hours per week

The successful candidate will support member relationships, community-building, engagement-focused content, and collaborative advocacy initiatives across our global network.

Deadline: Friday, 16 February 2026, 5pm.
Apply with a CV + 1-page cover letter to Claire.duggan@retina-international.org

Full role details below:
https://retina-international.org/were-hiring-member-engagement-coordinator/

20/01/2026

We’re very proud to share that Retina International has two abstracts accepted for presentation at ARVO [Association for Research in Vision and Ophthalmology] 2026 Annual Meeting, taking place in Denver, May 3–7.

➡️ Association Between Vision and Mental Health: Findings from Wave 3 of The Irish Longitudinal Study on Ageing (TILDA)

- First Author: Dr Nabin Paudel, PhD

➡️ Association Between Visual Acuity and Cognitive Performance: Evidence From The Irish Longitudinal Study on Ageing (TILDA)

- First Author: Dr Kate Fankun Cao

Both studies use data from The Irish Longitudinal Study on Ageing - TILDA - Trinity College Dublin, and explore the impact that vision loss has on mental wellbeing, cognitive health, independence, and quality of life.

This work is important for our community because it turns lived experience into evidence, strengthens advocacy for better services and policy, and supports more holistic, earlier, and patient-centred care.

We are excited to present this important work, and we look forward to sharing more details as ARVO 2026 approaches.



[Image 1: Portrait of Nabin Paudel. Framed in green with decorative black dots and shapes. Text below reads “ ” with the RI logo.
Image 2: Green text box on a dark background with decorative elements. Text reads: “Association Between Vision and Mental Health: Findings from Wave 3 of The Irish Longitudinal Study on Ageing (TILDA) – Dr Nabin Paudel, First Author.”
Image 3 - Black-and-white portrait of Kate. Framed in green with decorative black dots and shapes. Text below reads “ ” with the RI logo.
Image 4 - Green text box on a dark background with decorative elements. Text reads: “Association Between Visual Acuity and Cognitive Performance: Evidence From The Irish Longitudinal Study on Ageing (TILDA) – Dr Kate Fankun Cao, First Author.”]

19/01/2026

A big thank you to our Education Hub participants and faculty!

Last Friday, the second session of the Retina International Education Hub took place, and we’d like to thank all participants for their active engagement, thoughtful questions, and commitment to learning. Your contributions are what make this programme impactful.

We’re also very grateful to our expert faculty, Dr Jasleen Kaur Jolly and Dr Maximilian Pfau, for sharing their knowledge and perspectives on the retinal research and ophthalmology landscape.

We developed our Education Hub to empower participants. When patients are informed and confident, they can meaningfully contribute to research, innovation, and policy discussions. Programmes like this help build patient leadership, strengthen advocacy, and ensure lived experience is embedded in decision-making; ultimately leading to better outcomes for the retinal community.

Through 8 modules, participants explore topics ranging from retinal diseases and clinical trials to AI, regulation, real-world data, and the future of retinal research, all centred on the importance of the patient voice.

We’re inspired by the dedication of this cohort and look forward to the conversations and collaboration ahead.

Learn more here: https://retina-international.org/resources/education-hub/

08/01/2026

Congratulations to Professor Hélène Dollfus!

Retina International is delighted to congratulate Professor Hélène Dollfus on receiving the 2026 EURORDIS-Rare Diseases Europe Black Pearl Scientific Award, recognising her outstanding contributions to research in rare genetic eye diseases and her lifelong commitment to the rare disease community.

A long-standing collaborator of Retina International, Professor Dollfus combines scientific excellence with deep dedication to patients and families affected by rare eye conditions.

We are deeply grateful for Professor Dollfus’ collaboration, leadership, and unwavering commitment to the retinal disease community. We warmly congratulate her on this well-deserved recognition and thank her for her continued dedication. This award is a truly well-deserved recognition of her impact across research, care, and advocacy.

➡️ https://www.eurordis.org/black-pearl-awards/awardees/

19/12/2025

As 2025 comes to a close, we’re grateful to all of our incredible global Retina International community.

Together, we’ve advanced patient-led research, strengthened advocacy, and deepened collaboration worldwide. We are so excited for what's to come in 2026, as we embark on our new strategy and vision for Retina International.

We are looking forward to sharing more with you in the new year!

Our office will be closed from today, Friday, December 19th and will reopen on Monday, January 5th, 2026.

Wishing you and yours a restful break over the coming weeks,
From all of the team at Retina International - Avril, Nabin, Ellen, Kate, Maria and Claire.

04/12/2025

Today, we are delighted to feature Marina Leite Brandão for our Patient Voices campaign. Marina is a dedicated advocate whose work continues to strengthen and connect the global retinal community.

Living with Stargardt Disease, Marina has spent nearly a decade supporting patient organisations worldwide. Her advocacy is shaped by lived experience and driven by a commitment to inclusion, innovation, and ensuring young people have a meaningful voice in the future of retinal health.

Based in Brazil, she serves as Coordinator for Grupo Virtual Stargardt and as a Trustee at Stargardt's Connected in the UK. She also collaborates with Retina Brasil, Retina Minas, and Retina IberoAmerica, helping build regional and international connections.

Within Retina International, Marina contributes as a Board Member and Secretary of the RI Youth Council, amplifying the perspectives of young people with inherited retinal diseases.

Her background in innovation and public policy, combined with experience in inclusion-focused initiatives, makes her a strong advocate for ensuring patient perspectives guide research, services, and long-term health policy.

We’re proud to have Marina as part of Patient Voices, helping shape a more equitable and informed future for people affected by retinal diseases worldwide.

Learn more about our Patient Voices campaign: https://retina-international.org/patient-voices-deciding-our-futures/



Image description: A social media graphic titled “Patient Voices: Deciding Our Futures.” On the left, a quote reads: “Including patients in medical research helps define meaningful endpoints and promotes equity in access to care for those living with rare retinal diseases.” Beneath the quote is the name and roles: “Marina Leite Brandão, Grupo Virtual Stargardt Brazil, RI Board Member, RI Youth Council Secretary.” On the right, there is a black-and-white photo of Marina Leite Brandão smiling, standing with one hand on her hip and holding a white cane. The Retina International logo appears in the upper right corner. At the bottom, a yellow banner displays the text “ .”