Retina International

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 “ .”

03/12/2025

Today, on the International Day of Persons with Disabilities (IDPD), Retina International renews its commitment to building a future where everyone living with a retinal condition can access the eye health, research, and information they need.

Across the world, millions of people and families affected by retinal degenerative diseases still face barriers - whether it’s delays in diagnosis, inaccessible information, fragmented care, or being overlooked in health policy and research. IDPD is a powerful reminder of why our work matters.

At Retina International, we are:
- Supporting our members with the tools, knowledge, and resources they need to take part in research and policy conversations.
- Advocating for patient-centred policy at the international level, ensuring the retina community has a voice in decisions that shape their lives.
- Driving innovation by advancing research that reflects the real-world priorities and lived experiences of people with retinal conditions.

Accessibility is not just an ideal; it’s essential for meaningful participation. Our members depend on inclusive communication, equitable care, and a strong global voice to push for change.

We remain dedicated to working with our members, partners, and the wider disability community to break down barriers, raise awareness, and build systems that enable full participation for all.

Learn more about the goals of the United Nations International Day of Persons with Disabilities: 🔗 Link in our bio: https://www.un.org/en/observances/day-of-persons-with-disabilities

27/11/2025

Today, as part of our Patient Voices: Deciding Our Futures campaign, we are proud to highlight David Sanchez - a powerful advocate for the retinal community.

David serves as Presidente de Asociación Retina Murcia y FARPE y FUNDALUCE y FEDER. He also serves as a Director on the Board of Retina International. He is living with Retinitis Pigmentosa and explains why patient representation in policy and research is essential:

“As individuals living with inherited retinal dystrophies, we don't just experience the condition - we bring essential knowledge shaped by that experience. Including our voices in research decisions is crucial to ensure efforts truly reflect our needs.”

He also reminds policymakers why excluding patient perspectives undermines progress:

“When patients are involved in the assessment of health technologies, we help ensure that innovation is not only cutting-edge, but also practical, accessible, and aligned with our daily lives.”

David is deeply committed to strengthening communication, participation, and collaboration across the retina community. His leadership reflects the core purpose of our campaign: to ensure patients are not only heard, but recognised as essential partners in shaping the future of health innovation.



[Image description: Graphic featuring the Retina International “Patient Voices: Deciding Our Futures” campaign. On the left, a quote reads: “Patients don't just experience our condition. We bring essential knowledge shaped by that experience. Including our voices in research decisions is crucial to ensure efforts truly reflect our needs.” Below the quote: “David Sanchez, Presidente FARPE, FUNDALUCE, RETINMUR” A yellow banner at the bottom reads “hashtag .” On the right, a black-and-white photo of David Sanchez smiling, wearing a light sweater and backpack straps.]

25/11/2025

Prioritising the Burden of Geographic Atrophy and Treatment Expectations: Research by Retina International.

Understanding What Truly Matters to People Living With Geographic Atrophy (GA).

Retina International conducted research to identify and rank the real-world burdens of GA and the treatment outcomes that matter most to patients and patient advocates worldwide.

Key insights include:
• Loss of independence ranked as the most significant burden of GA
• Difficulties with face recognition, mobility, and daily activities emerged as critical challenges
• Participants identified vision stability, reduced progression, and meaningful real-world outcomes as top priorities for future therapies
• The study highlights the need for integrated psychological support, improved PROMs, and patient-centred clinical endpoints

This work strengthens the evidence base needed to guide innovation, ensure relevant clinical trial design, and improve the quality of life for people living with GA.

🔗 Read the full study: https://www.dovepress.com/prioritising-the-burden-of-geographic-atrophy-and-treatment-expectatio-peer-reviewed-fulltext-article-OPTH

20/11/2025

Retina International’s Patient Voices: Deciding Our Futures is an initiative dedicated to protecting and elevating patient participation in health innovation and policy. As part of our campaign, we are delighted to feature our very own CEO, Avril Daly.

For decades, our global community has worked to secure the patient voice at the decision-making table. Yet emerging legislative changes across the EU and beyond risk diminishing or even removing patient representation from health innovation frameworks.

Avril is a long-standing leader in rare disease and eye health policy, representing patient organisations across 43 countries and championing the critical role of patients in shaping research and innovation. She also lives with Retinitis Pigmentosa (RP).

Avril puts it clearly:

“The patient voice has proven its value again and again. When patients contribute to decisions, research becomes more focused on real needs, and innovation delivers tangible benefits to the people it’s meant to serve.”

Retina International proudly stands with the EURORDIS-Rare Diseases Europe and European Patients'​ Forum’ initiative , calling on policymakers to safeguard patient participation across health and research.

Because when patients are included, innovation becomes stronger, more relevant, and more equitable.

Learn more about our campaign, featuring contributions from Russell Wheeler, Dr Robert Koenekoop, Leighton Boyd, Pr. Isabelle Audo and Claudette Medefindt: https://retina-international.org/patient-voices-deciding-our-futures/



[Image description: A graphic titled “Patient Voices: Deciding Our Futures.” On the left, a large quote reads: “The patient voice has proven its value again and again. When patients contribute, research becomes more focused on real needs. It delivers tangible benefits to the people it’s meant to serve.” Beneath the quote is the attribution: Avril Daly, CEO, Retina International. On the right is a black-and-white portrait of Avril Daly, smiling slightly and wearing a dark blazer. At the bottom is a yellow banner with the hastag . The Retina International logo appears in the top right corner.]

19/11/2025