Retina International

26/03/2026

The latest Retina International newsletter is now available!

Inside, you’ll find updates from across our global network, including our research, education, and member-led initiatives.

We share updates on our ongoing research into the mental health impact of vision loss, with early findings to be presented at the Association for Research in Vision and Ophthalmology (ARVO) and the Foundation Fighting Blindness United in Vision conferences.

This edition also reflects the strength of our community, as we take a moment to remember valued members we have recently lost and recognise the lasting impact of their contributions.

Meanwhile, our policy work continues to advance, and we are looking forward to contributing to an upcoming European Medicines Agency European Medicines Regulatory Network (EMRN) workshop on geographic atrophy, helping to bring the patient perspective into discussions on treatment development.

➡️ Access the newsletter here: https://mailchi.mp/retina-international/spring2026newsletter

There is a Word text-only version available to download here: https://retina-international.org/wp-content/uploads/2026/03/Spring-Newsletter.docx

Thank you to everyone who continues to contribute to this shared effort!

[Image: Graphic showing an envelope moving in a circular pattern with the RI logo placed bottom centre.]

19/03/2026

New Publication!

Retina International CEO, Avril Daly, contributed to a new article featured in The Link, Springer Nature, Ophthalmology and Therapy (11 March 2026).

“Post-Visual Diagnosis Distress: The Weight of Threatened Sight” introduces Post-Visual Diagnosis Distress (PVDD) - a descriptive, nondiagnostic framework, highlighting the emotional impact of receiving a vision-threatening diagnosis. PVDD isn’t a psychiatric disorder, but a clinically meaningful construct and a way to recognise the fear, uncertainty, and emotional distress many patients face, even before major vision loss.

By legitimising patient experiences and supporting empathetic communication, PVDD can improve engagement, quality of life, and psychological outcomes for people with conditions like AMD, glaucoma, and other chronic eye diseases.

📄 Read the full article (open access): https://link.springer.com/article/10.1007/s40123-026-01362-9

[Authors: Tariq M. Aslam, Focke Ziemssen, Anat Loewenstein, Rajesh Nair, Mhairi Thurston, Amanda Hawkins & Avril Daly]

Receiving a diagnosis of a vision-threatening eye condition is a psychologically salient event for many patients. Across ophthalmology, fear, uncertainty, and emotional distress are commonly observed at the time of diagnosis, often before substantial functional vision loss occurs. Although depressio...

18/03/2026

Last week, our Head of Research, Dr Nabin Paudel, participated in the COST Action Meeting, Retina4Future at the NOVA Medical School - Faculdade de Ciências Médicas, Lisbon, Portugal.

Dr Paudel presented on the topic of "Hidden Impacts of Inherited Retinal Degenerations: Implications for care pathways and clinical trial endpoints." The presentation was based on the preliminary data from our mental health study in retinal degenerative diseases.

The meeting brought together scientists, clinicians, and researchers from several European countries to discuss novel methodologies, techniques, and approaches for molecular, stem cell, and gene therapy research in retinal research.

It was wonderful to see the patient voice embedded in the program, with a short workshop at the end on how patients can be involved in bioinformatics research.

We look forward to engaging and contributing to this network as much as possible going forward!

Learn more about the initiative here: https://lnkd.in/eN4RSkVE

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.”]

19/12/2025

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.