Retina International

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

05/11/2025

Retina International Education Hub Deadline Extended!

This Education programme is designed to equip advocates with the knowledge and skills to be effective agents of change in the retina community and beyond.

Over the course of this four-month programme, participants will work closely with subject matter experts across a range of selected topics, gaining comprehensive insight and experience into the international ophthalmology research and advocacy landscape.

There’s still time to apply for the Retina International Education Hub. Join a global community of patients, caregivers, and advocates to:

- Gain expert insights on retinal degenerative diseases
- Access practical tools and resources
- Connect with a supportive international network
- Take part in interactive workshops

This is an incredible opportunity to learn from our faculty, all of whom are innovative leaders in their fields, including: Jasleen Kaur Jolly, Kari Branham, Joseph Carroll, Kaisa Immonen, Nikolas Pontikos, Kapil Bharti, Todd Durham, Maximilian Pfau, Russell Wheeler, Dominik Fischer and Joan O'Callaghan.

🗓 Programme starts: December 2025

Applications close at 11:59 PM CET, Friday, November 21st.

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

20/10/2025

Retina International is pleased to take part in “Research Together: Building Relationships and Partnering on Health-Focused Funding Applications”, hosted by Maynooth University Research Development Office (RDO) in collaboration with Health Research Charities Ireland and The Wheel, as part of Research Week 2025.

Our Scientific Programme Manager, Dr Ellen Moran, PhD, presented the work of RI and shared insights on:

- Our organisational mission and research priorities
- What meaningful partnership and involvement look like
- What works (and what doesn’t!) when collaborating on research and funding proposals.

We’re looking forward to the remaining sessions and to learning more about how we can work together to make health research more impactful and inclusive.

| Maynooth University

16/10/2025

“Patients are the center of our work; they are our preoccupation and the reason why we are where we are.”
- Professor Isabelle Audo, M.D., Ph.D.

As part of our ongoing Patient Voices: Deciding Our Futures campaign, we’re proud to feature Professor Isabelle Audo, ( member, CHNO des Quinze-Vingts).

Through her research on the molecular pathways involved in eye diseases, from gene to therapy, Professor Audo exemplifies how innovation thrives when patients remain at the heart of research.

When patients contribute to shaping policy, the outcomes of research and care reflect real needs and lived experiences. Decisions made about health innovation must include those most affected, the patients and families whose lives depend on them.

As legislative discussions continue across Europe and beyond, we stand with leaders like Professor Audo to ensure that patients remain at the table, helping to shape a future where innovation truly serves the people it’s meant to help.

Her message reinforces why we must continue to and ensure that the patient voice remains central to shaping health innovation worldwide.

🔗 Learn more - link in our bio.



[Image description: Graphic titled “Patient Voices: Deciding our Futures” from Retina International. It features a portrait of Professor Isabelle Audo, MD, PhD, from the Institut de la Vision. The quote reads: “Patients are the center of our work. They are our preoccupation. They are the reason why we are where we are!” The Retina International logo appears in the top right corner, and a yellow banner at the bottom reads .]

08/10/2025

As World Sight Day 2025 begins in Australia, our focus this is to .

We are proud to launch our campaign, Patient Voices: Deciding Our Futures, which is dedicated to elevating and protecting the patient voice in health innovation.

Each week, we’ll feature the perspectives of patients and clinicians who are working to ensure that lived experience continues to shape policy, research, and innovation in retinal health.

Fittingly, we begin in Australia, where World Sight Day 2025 (October 9) dawns first. Launching our campaign is Leighton Boyd, Chair of Retina Australia.

Leighton, who is living with Retinitis Pigmentosa, has dedicated more than forty years to advocating for people living with inherited retinal diseases, ensuring access to information, community, and support.

Reflecting on his experience, Leighton shares:

“When patients have a voice in establishing policy, programs and systems are better designed to meet real-world needs. Patient perspectives bring lived experience to the table, helping decision-makers understand what truly matters in care and innovation.”

He adds:

“When patients are heard, research becomes more relevant. It focuses on meaningful outcomes that can change lives.”

The retina field is one of the most innovative areas in health research and development, and we will do all we can to protect the patient voice within it. We support the joint EURORDIS-Rare Diseases Europe and European Patients' Forum campaign.

Learn more and join the movement to keep patients at the table: https://retina-international.org/patient-voices-campaign/



[Image description: A social media graphic from Retina International’s “Patient Voices: Deciding our Futures” campaign. It features a black-and-white portrait of Leighton Boyd, Chair of Retina Australia, smiling and wearing a light shirt. Next to his image is a quote that reads: “When patients have a voice in establishing policy, programs and systems are better designed to meet real-world needs.” The Retina International logo appears in the top right corner, and at the bottom is the campaign hashtag .]

07/10/2025

We're thrilled to be here for the Ern-Eye Scientific Workshop 2025, at the Robert Hollman Foundation in Padua, Italy.

Our Scientific Programme Manager, Dr. Ellen Moran, is in attendance, in addition to a valued member of the Retina International Board, David Sanchez [FARPE, FUNDALUCE FARPE y directivo de FEDER ONG].

The first day focused on low vision in children and on the transition from paediatric to adult services, a crucial step for patients and families.

Day two focuses on assessing visual functions in adults, rehabilitation pathways in adults, and newer assistive technologies and innovations. We were really delighted to listen to Prof. Bart Peter LEROY and Prof. Isabelle Audo discuss Act4RED, which is an upcoming initiative that Retina International has contributed to.

The sessions have been insightful and inspiring, highlighting the strength of collaboration across clinical, scientific, and patient communities in driving forward research and care for people living with rare eye diseases.