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Act4RED
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RI World Sight Day Webinar 2025: The Patient Voice and Innovation
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Retina International Youth Conference 2025
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Using the nominal group technique to prioritize the burden of geographic atrophy and treatment expectations of therapies: perspectives from patient leaders
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Advocacy: Who, What, When, and Why?
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The Cost to Wellbeing when living with an IRD
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Retina Action: Call to Action Launch Webinar
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"Bench to Bedside: The journey to creating a sight-saving drug" with TransMed
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US & Canada IRD Cost of Illness Study, A Panel Discussion
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COVID-19 Webinar: A Unified Voice for the Ageing Community
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Act4RED wants to Stop the Loss of vision.
This podcast is to mark Rare Disease Day 2026. Hosted by Avril Daly, CEO of Retina International.
Panel: Hélène Dollfus, Bart Leroy, and David Keegan.
Act4RED is a joint initiative of Retina International, ERN‑EYE, Foundation Fighting Blindness, and the Ocular Diseases Forum, who are all bringing together patients, clinicians, and researchers to drive evidence‑based, patient‑centred action that improves diagnosis, care, and innovation for people living with Rare Eye Disease (RED).
We are calling to Stop the Loss of vision and working to improve outcomes for people affected by inherited retinal degenerations, anterior segment disorders, neuro‑ophthalmic conditions, and paediatric rare eye diseases.
Act4RED focuses on preserving vision by generating strong evidence, demonstrating the high unmet need, and raising awareness among decision‑makers across health ministries, research bodies, and regulators. It highlights the delays people face in diagnosis, access to specialist care, rehabilitation services, and emerging therapies.
The initiative ensures that the unique needs of the patient community shape policy, research, and care pathways. This includes promoting a holistic approach that integrates mental health, psychosocial support, and lifelong care. It also underscores the importance of fit‑for‑purpose indicators, meaningful outcome measures, and embedding patient value early in the development and evaluation of new innovations.
By bringing together researchers, clinicians, and patients, Act4RED amplifies the need for coordinated policy action at above‑country level and drives solutions that can genuinely improve the lives of people living with rare eye diseases.
Moderator: Avril Daly 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 and Retina Specialist, Mater Dublin)
The 2025 Retina International World Youth Conference is a unique event bringing together young people from across the globe to learn, connect, and be inspired. This conference showcased the experiences of young leaders living with visual impairment and highlighted opportunities in research, advocacy, and career development. It also marked World Retina Day on September 28. Hosts: Marina Leite and Vincent Fuchs, RI Youth Council.
On September 27, 2024, on the occasion of World Retina Day, Retina International organized a webinar discussing the findings of one of its studies: the use of nominal group technique among patient leaders to prioritise the burden of GA and treatment expectations of GA therapies. There was an overwhelming participation of our membership and industry partners with an active engagement and discussion on the content presented. RI CEO Avril Daly started the webinar with an introduction to the importance of patient perspective and current lack of understanding of the overall burden of GA and patient perceived treatment benefits. This was followed by the discussion of study methods, study findings and the discussion of study by RI’s Head of Research and Programs Dr Nabin Paudel. The session was followed by a Q &A discussion that was led by RI’s scientific program manager Dr Ellen Moran. Participants from our member organizations and industry partners provided useful comments and feedback. The recorded version of the webinar can be found here.
This hour-long webinar explores the process of participating in health advocacy; gathering and generating evidence, and building networks and coalitions. Joining us on the panel were: Clara Hervas, Public Affairs Manager, EURORDIS and Rare Diseases International Sara Brown, Director of Government Affairs, Prevent Blindness USA.
This hour-long webinar explores the process of participating in health advocacy; gathering and generating evidence, and building networks and coalitions. Joining us on the panel were: Clara Hervas, Public Affairs Manager, EURORDIS and Rare Diseases International Sara Brown, Director of Government Affairs, Prevent Blindness USA, and Dimitar Yonchev, Youth Patient Advocate, PRO Retina Deutschland e.V. To view the Retina International Advocacy toolkit, visit our website: https://retina-international.org/…and Dimitar Yonchev, Youth Patient Advocate, PRO Retina Deutschland e.V. To view the Retina International Advocacy toolkit, visit our website: https://retina-international.org/…
On World Sight Day, 2020, Retina International published a Cost of Illness study outlining the economic burden of IRDs in the US and Canada. This was the second publication in our suite of IRDCOUNTS studies, following a pilot study carried out in the UK and Republic of Ireland in 2019.
Amongst many key findings from these studies, one stood out above all: across all four countries studied to date, “wellbeing” has consistently ranked as the largest cost to those who live with an IRD. The scale and significance of these findings has warranted further discussion on what is a clear and urgent unmet need for the IRD community.
So, how do we define wellbeing? How were these costs calculated? What factors are making such a significant impact on the wellbeing of those living with IRDs – and how do we mitigate them?
On January 12th, 2021, the Retina Action coalition launched a Call to Action for the ageing eye on the theme of Inclusion & Wellbeing.
Here, we call upon governments around the world to collaborate with patient and advocacy organisations to develop new, and implement existing public policy actions that address the inclusion and access of older visually impaired citizens as equal members of society. To mark the launch of this call to action, Retina International hosted a panel discussion on the wellbeing and inclusion of the ageing community living with low vision in our society.
A series of bite-size talks by Early-Stage Researchers from the TransMed consortium, that will take us through the step-by-step process of drug development, clinical trials, and beyond. This webinar is ideal for those living with a Retinal Degeneration, or for those who are simply curious about learning the start-to-finish process of translational medicine, and the story of life changing research.
On Thursday October 22nd, 12.00 EST, Retina International were delighted to host a webinar discussing the key findings and impacts of our new groundbreaking US & Canada Cost-of-Illness Study.
On September 3rd, Retina International hosted a multi-disciplinary panel exploring the impact of COVID-19 on the ageing patient community, particularly those living with visual impairments and neurological conditions.