Retina International

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.

02/10/2025

Join us for a free online webinar on World Sight Day!

Topic: The Patient Voice and Innovation - A panel discussion, hosted by Retina International on .

This World Sight Day, join us as we highlight the milestone collaboration between the RDH12 Alliance [ Fund for Sight, Eyes on the Future, Candle in the Dark] and Opus Genetics, showcasing how powerful the patient voice can be in driving innovation. The panel will explore how the patient voice is shaping innovation in research, therapies, and care for retinal diseases.

🗓️ Date: October 9
⏱️ Time: 1:30 PM UK | 2:30 PM CET | 8:30 AM EDT
⌛ Duration: 1 hour

Panellists:
Silvia Cerolini (Eyes on the Future, Coordinator RDH12 Alliance)
Christina Fasser (Past President, Retina International)
Ben Shaberman (VP, Science Communications, Foundation Fighting Blindness)
Russell Wheeler (Patient Advocate, LHON Society)
Kirk Stephenson (Consultant Ophthalmic Surgeon & Retina Specialist, Mater Private Network, Children’s Health Ireland (CHI), Dublin)

Moderator: Avril Daly (CEO, Retina International)

🎥 If you cannot attend on the day, please do still register. We will send a recording to all registrants after the event.

Don’t miss this unique opportunity to hear from our expert panel.

❗ Registration is required for this event!
https://us06web.zoom.us/meeting/register/_uynHQLcQcGspOXYUQpOtA

30/09/2025

On September 19 in Strasbourg, Prof. Hélène Dollfus, coordinator of Ern-Eye, received the insignia of Commandeur de l'Ordre du Mérite, one of France’s highest honours. Avril Daly, CEO of Retina International and president of EURORDIS-Rare Diseases Europe, was honoured to attend the ceremony and celebrate Prof. Dollfus’s remarkable contributions to medical genetics and ophthalmology.

Avril shared her pride in witnessing this recognition, which highlights not only Prof. Dollfus’s achievements as a clinician and researcher but also her deep commitment to advancing care for people living with rare sensory diseases across Europe.

Read the full press release from ERN-EYE here: https://www.ern-eye.eu/pr-helene-dollfus-awarded-the-insigne-of-commandeur-de-lordre-national-du-merite/

30/09/2025

Retina International recently published a new research report – “Prioritising the Burden of Geographic Atrophy (GA) and Treatment Expectations: A Modified Nominal Group Technique Study with International Patient-Led Organisations” – in the journal Clinical Ophthalmology (Dove Medical Press).

The study gathered the voices of international patient-led organisations, including Retina Australia, to better understand the true impact of GA on daily life and to define what outcomes matter most to patients when considering future treatments. For example: when asked about treatment expectations, participants prioritised stability of vision, the ability to recognise faces, and convenient treatment options such as one-time therapies.

The study also found that psychosocial and low-vision support are important considerations for patients.

You can read the full research report at: https://www.dovepress.com/prioritising-the-burden-of-geographic-atrophy-and-treatment-expectatio-peer-reviewed-fulltext-article-OPTH



**Image of an artist’s rendition of how a person with GA might see the world, with the text, “New Research: Patient Priorities in Geographic Atrophy Care” below.

28/09/2025

Hoy, Retina International se enorgullece de apoyar a la Federación de Asociaciones de Distrofias Retinianas Hereditarias de España () y a su Fundación FUNDALUCE en la campaña "Luces Inspiradoras: Iluminamos la Retina" con motivo del Día Mundial de la Retina, el 28 de septiembre de 2025.

La iniciativa, que comenzó en un solo pueblo de España en 2021, ha crecido. Hoy, comunidades de todo el mundo se unen iluminando lugares emblemáticos de azul y verde.

"Al iluminar lugares emblemáticos, la campaña "Luces Inspiradoras" no solo conciencia sobre las enfermedades hereditarias de la retina, sino que también llama la atención sobre la urgente necesidad de un diagnóstico precoz, un acceso equitativo a la atención y una inversión sostenida en investigación e innovación".

– Avril Daly, CEO de Retina International

Más información: [Enlace en nuestra biografía]



Today, Retina International is proud to support the Federation of Associations of Inherited Retinal Dystrophies of Spain ( ) and its Foundation FUNDALUCE in the Inspiring Lights: We Light Up the Retina campaign for World Retina Day, September 28, 2025.

From one town in Spain in 2021, the initiative has grown. Today, communities worldwide join by lighting landmarks in blue and green.

“By illuminating landmarks, the Inspiring Lights campaign not only raises awareness of inherited retinal diseases but also calls attention to the urgent need for early diagnosis, equitable access to care, and sustained investment in research and innovation.”
– Avril Daly, CEO, Retina International

Learn more: [Link in our bio]

28/09/2025

Hoy, Retina International se enorgullece de apoyar a la Federación de Asociaciones de Distrofias Retinianas Hereditarias de España (FARPE) y a su Fundación FUNDALUCE en la campaña "Luces Inspiradoras: Iluminamos la Retina" con motivo del Día Mundial de la Retina, el 28 de septiembre de 2025.

"Al iluminar lugares emblemáticos, la campaña "Luces Inspiradoras" no solo conciencia sobre las enfermedades hereditarias de la retina, sino que también llama la atención sobre la urgente necesidad de un diagnóstico precoz, un acceso equitativo a la atención y una inversión sostenida en investigación e innovación".
– Avril Daly, CEO de Retina International

Más información: https://www.retinosisfarpe.org/inspiringlights/



Today, Retina International is proud to support the Federation of Associations of Inherited Retinal Dystrophies of Spain ( FARPE ) and its Foundation FUNDALUCE in the Inspiring Lights: We Light Up the Retina campaign for World Retina Day, September 28, 2025.

“By illuminating landmarks, the Inspiring Lights campaign not only raises awareness of inherited retinal diseases but also calls attention to the urgent need for early diagnosis, equitable access to care, and sustained investment in research and innovation.”
– Avril Daly, CEO, Retina International

Learn more: https://www.retinosisfarpe.org/inspiringlights/

24/09/2025

The Retina International Youth Council World Conference is taking place this Saturday, and we’re excited to introduce a few more of this year’s speakers:

Stuart Haxell: Born in 1994 in Sligo, Ireland, stuart haxell has built a career at the intersection of technology, sport, and advocacy while living with a progressive visual impairment. In 2024, he received Luxturna gene therapy, later sharing his story through national media and an RTÉ Nationwide documentary. He currently works as a Digi Tutor with Fighting Blindness Ireland.

Cindy G. Boer, PhD, from the Netherlands, is a professor of functional genomics whose research is widely published in the field of genetics. Living with Usher syndrome, she has been severely hearing impaired since childhood and began losing her night vision as a teenager, later receiving a diagnosis during her PhD studies in 2017. Despite the challenges of progressive vision and hearing loss, Cindy has built a successful academic career through openness and support from colleagues.

As mentioned previously, we are also thrilled to be joined by:
Marina Leite Brandão, Vincent Fuchs, Dr. Nabin Paudel, PhD, Catherine Marrache and Sebastian Sutter.

➡️ Join us on Saturday, 27 September at 16:00 CET online to take part in a global youth conversation on leadership, research, and advocacy.

We know that this timezone, unfortunately, won't suit everyone. However, we will ensure that a recording is sent to all registrants after the event!

🔗 Register here: https://us06web.zoom.us/meeting/register/q3w2ZW9oQjK7ZjjaLQU7Pg #/registration



[ID: Image 1: Graphic introducing Stuart Haxell as a speaker at the Retina International Youth Council World Youth Conference. The image shows Stuart. Text reads: ‘Meet the Speakers. Stuart Haxell. Digicoach Tutor and Sportsperson. Topic: Career Paths’.

The background is green with abstract pink and black design elements and the Retina International Youth Council logo.]

Image 2: Graphic with the Retina International Youth Council logo and text: ‘World Youth Conference. Saturday, 27 September. 4pm CET – Online (Zoom).’ Background is light purple with abstract green and black design elements.]