Retina International

Retina International A global umbrella organisation for patient led charities
RCN: 20206322 Registered Charity Number (RCN) 20206322

Who gets represented by clinical evidence, and who gets left behind?As retinal care continues to advance, clinical trial...
03/09/2026

Who gets represented by clinical evidence, and who gets left behind?

As retinal care continues to advance, clinical trials are increasingly designed to identify and enrol patients most likely to benefit from a particular treatment. While these approaches can help demonstrate treatment effectiveness, they also raise an important question: what happens to the patients who don't fit the profile?

A new editorial, “Enriched trial designs and the patients left behind,” by Gregor S. Reiter and Anat Loewenstein, explores this challenge and the need to ensure that advances in retinal care translate into meaningful options for all patients.

Two messages stand out:

1. Evidence needs to come earlier and be better planned. Patients who are well suited to enriched trials should also be able to understand how effective a treatment is in the context of their specific condition and circumstances.

2. Research must continue for those who cannot benefit from currently approved approaches. We need to identify alternative targets, outcomes and measures of treatment benefit before irreversible vision loss and its impact on quality of life become even greater.

Ophthalmology and retinal care have come a long way, from observing vision loss to actively working to preserve and improve vision. But important gaps remain, including generalisability of evidence, restrictive reimbursement and advanced indications that remain outside current treatment pathways.

Bridging these gaps will require academia, industry, regulators and patient organisations to work together, with patients at the centre of how we define meaningful evidence and treatment benefit.

There is much to celebrate in how far retinal care has come, but there is still a long road ahead to ensure that no patient is left behind.

Read the editorial: https://link.springer.com/article/10.1007/s00417-026-07452-5

Authors: Gregor S. Reiter, Department of Ophthalmology and Optometry, Medical University of Vienna; and Anat Loewenstein, Ophthalmology Division, Tel Aviv Medical Center, affiliated with Tel Aviv University.



[ID: Graphic promoting a new editorial on enriched clinical trials, highlighting the need for more inclusive, patient-centred research in retinal care, with a QR code to read the editorial.]

Foundation Fighting Blindness is hosting an upcoming webinar exploring the latest developments in Thyroid Eye Disease (T...
02/09/2026

Foundation Fighting Blindness is hosting an upcoming webinar exploring the latest developments in Thyroid Eye Disease (TED) care.

Date: 17 October 2026
Time: 12:00-1:30 PM ET
Platform: Online via Zoom

The session will feature:

Dr. Jody Abrams - Board-certified ophthalmologist and fellowship-trained specialist in neuro-ophthalmology and oculoplastic surgery

Dr. Prem Subramanian - Endowed Chair and Chief of Neuro-Ophthalmology at the University of Colorado, with expertise in complex TED treatment and clinical research

The webinar will provide an opportunity to learn more about current advances in TED care and hear directly from experts in the field.

Register to attend - https://www.fightingblindness.org/events/quarterly-vision-webinar-thyroid-eye-disease-ted-8259?vcrmeid=4LEpVsNx1EyNuIRKvGbHA&vcrmiid=GLOWnQq18UOFaF-05_pBsQ

Please feel free to share this opportunity with anyone who may benefit from it.



[ID: Graphic for the FFB Quarterly Vision Webinar on Thyroid Eye Disease (TED), including the webinar date, time, and branding.]

Europe’s clinical trial landscape is changing and for people living with rare diseases, the stakes are enormous.Europe’s...
31/08/2026

Europe’s clinical trial landscape is changing and for people living with rare diseases, the stakes are enormous.

Europe’s share of global clinical trials has fallen from 22% to 12% since 2013, representing around 60,000 fewer clinical trial places. For the 95% of people living with rare diseases who have no approved treatment, access to a clinical trial can mean access to a potential therapy when few other options exist.

In a recent interview with Pharma Boardroom, our CEO Avril Daly explores what this changing landscape means for people living with rare and retinal diseases, from the growing pipeline of potential retinal therapies to the complex legislative changes shaping research and healthcare across Europe.

Avril also reflects on an encouraging shift within the rare disease community, from identifying problems to coming together to build solutions.

Read the full interview and hear Avril’s perspective on the future of clinical research, innovation and access across Europe - https://pharmaboardroom.com/interviews/avril-daly-ceo-retina-international-president-eurordis-rare-diseases-europe/



[ID: Graphic featuring Avril Daly, CEO of Retina International, with a quote on patient-led innovation and measuring what matters, from a Pharma Boardroom interview.]

We’re delighted to be attending the European Federation of Neurological Associations (EFNA) Conference in Dublin this Se...
27/08/2026

We’re delighted to be attending the European Federation of Neurological Associations (EFNA) Conference in Dublin this September!

The two-day event will bring together patients, patient organisations, researchers, clinicians, policymakers and industry to explore the future of neurology in Europe, from patient empowerment and research to AI, digital innovation and equitable access to care.

Dates: 25-26 September 2026
Location: Hyatt Centric, The Liberties, Dublin

If you’ll be there, make sure to come and say hello to Navya Dhir, our Membership & Engagement Coordinator, who’ll be attending on behalf of Retina International 👋

Registration is still open: https://efna-conference.net/about

We’re looking forward to seeing many familiar faces and making some new connections along the way!



[ID: Promotional graphic for the EFNA Conference Dublin 2026, featuring the September 25-26 dates, thematic areas covering patient empowerment, research and care, AI and digital innovation, equity and access, collaboration, and neurology policy.]

Retina International World Youth Conference is here! 🌍Something exciting is coming for the young people in our global re...
25/08/2026

Retina International World Youth Conference is here! 🌍

Something exciting is coming for the young people in our global retinal community.

Date: 18 September 2026
Time: 9 AM CET | 3 PM CET
Location: Online
Eligibility: For young people aged 18–35

This year, we're bringing young people from around the world together for real conversations, shared experiences, new ideas and plenty of opportunities to connect.

We'll be talking about mental health, AI, assistive technology and navigating everyday life with a retinal condition and, most importantly, creating space for young people to hear from and learn from each other.

And we're not giving everything away just yet! This year's Youth Conference is the beginning of something bigger.

More speakers, more details and more exciting plans are coming soon.

Registration is now open!

Use this link to register for 9 AM CET (4:30 PM ACST/7 PM NZST) - https://us06web.zoom.us/meeting/register/ejQzySn-TIav0q8eNswt5g

Use this link to register for 3 PM CET (9 AM EDT) - https://us06web.zoom.us/meeting/register/GH77ahoySj6rCvbNtuIo1A

Know a young person living with a retinal condition who should be there? Tag them or share this with them!

We can't wait to see you there 💙



[ID: A promotional graphic for the RI Youth Council World Youth Conference, featuring the event date, two CET session times, and online Zoom format.]

  is shaping up to be a busy one for Retina International!We're delighted to be joining the 26th EURETINA Congress in Vi...
20/08/2026

is shaping up to be a busy one for Retina International!

We're delighted to be joining the 26th EURETINA Congress in Vienna this October, with a packed programme of research, patient engagement, policy and collaboration.

One of the highlights will be our joint Retina International & EURETINA Symposium: “Fostering Retinal Innovation in Europe through Structured Collaboration.”

Saturday, 3rd October 2026 | 11:30 AM - 12:30 PM CEST

Location: Strauss 1, VIECON – Vienna Congress & Convention Center

Co-Chaired by Franz Badura (Board Chair, Retina International) and Prof. Nicole Eter, the session will explore some of the key challenges and opportunities shaping retinal research and innovation in Europe.

The session will cover:

- The current landscape and challenges in retinal research and innovation
- Value-based care and patient-centricity in clinical innovation, presented by Dr Nabin Paudel, Director of Research, Patient Evidence and Programmes at Retina International
- European policy and collaborative action by Prof. Hélène Dollfus
- A panel discussion and audience Q&A

Bringing together perspectives from across the retinal community, the session will explore how structured collaboration, patient-centred approaches and coordinated action can help foster meaningful innovation.

Stay tuned, we have more updates coming soon!



1: Graphic promoting the Retina International and Euretina joint session, “Fostering Retinal Innovation in Europe through Structured Collaboration,” at the 26th Euretina Congress in Vienna on 3 October 2026.

2: Graphic introducing the speakers and co-chairs of the Retina International–Euretina joint session, featuring photographs of Franz Badura, Prof. Nicole Eter, Dr. Nabin Paudel and Prof. Hélène Dollfus.

🎥 The European Medicines Agency Workshop on Geographic Atrophy endpoints is now available to watch.Earlier this year, Re...
17/08/2026

🎥 The European Medicines Agency Workshop on Geographic Atrophy endpoints is now available to watch.

Earlier this year, Retina International was proud to contribute patient voice and expertise to this session that brought together regulators, clinicians, researchers, industry and patient representatives to explore an important question:

How can we measure treatment benefit in ways that reflect what truly matters to people living with GA?

From visual function and imaging to patient-reported outcomes, quality of life and emerging measures of functional vision, patient perspectives were part of the conversation throughout the day.

Retina International was represented across multiple sessions, with contributions from our Board Member, Franz Badura, our CEO, Avril Daly, our Director of Research, Patient Evidence and Programmes, Dr Nabin Paudel, and our members, Alba Perez from FARPE and Inga Britt from The Norwegian Association of the Blind and Partially Sighted.

We were particularly pleased to see patient experience recognised as an essential part of discussions around how treatment benefit is measured and ultimately evaluated.

Workshop recording - https://www.ema.europa.eu/en/events/european-medicines-regulatory-network-emrn-workshop-geographic-atrophy-endpoints -recording-83299

Read more on RI’s contribution to the workshop - https://retina-international.org/retina-international-contributes-patient-voice-and-expertise-to-ema-workshop-on-geographic-atrophy-endpoints/

We look forward to seeing how the outcomes of these conversations contribute to the continued development of meaningful, patient-centred endpoints for Geographic Atrophy.



[ID: Graphic featuring a video still from the European Medicines Regulatory Network workshop on Geographic Atrophy endpoints. Text below says “Recording Available Now.”]

Foundation Fighting Blindness is now accepting applications for its Clinical Research Fellowship Award (CRFA), providing...
15/08/2026

Foundation Fighting Blindness is now accepting applications for its Clinical Research Fellowship Award (CRFA), providing one year of $65,000 support for aspiring clinician-scientists interested in (IRDs).

The award is open to eligible clinicians with an M.D., D.O., O.D. or recognised equivalent foreign degree, and applications can be made in coordination with domestic or international academic institutions, hospitals and affiliated laboratories.

The programme is designed to support clinicians in their first or second year of fellowship, helping develop the next generation of researchers working towards better understanding and treatment of IRDs.

Application deadline: 15th October 2026
Proposer's Day: 3rd September 2026, 11 AM–12 PM ET

Individuals with disabilities and those from underrepresented racial, ethnic and gender groups are encouraged to apply.

If you're eligible, or know an early-career clinician-scientist who might be, please share this opportunity with your network.

Find out more and apply: https://www.fightingblindness.org/clinical-research-fellowship-award-crfa?vcrmeid=vmsyyJCqwUyYc8UTfqPg&vcrmiid=GLOWnQq18UOFaF-05_pBsQ



[ID: Graphic announcing the Foundation Fighting Blindness Clinical Research Fellowship Award (CRFA). It highlights a $65,000 one-year award supporting early-career clinician-scientists researching IRDs, with Proposer’s Day on 3 September 2026.]

The eclipse is here! Here's how to enjoy it while protecting your eyes. 🌑☀️A solar eclipse is a spectacular natural phen...
12/08/2026

The eclipse is here! Here's how to enjoy it while protecting your eyes. 🌑☀️

A solar eclipse is a spectacular natural phenomenon, and for many people it may be a once-in-a-lifetime experience.

But there's one thing we don't want you to forget: protect your retina.

Looking directly at the Sun, even when most of it is covered by the Moon, can cause permanent retinal damage, which can be painless, and vision changes may not be immediately obvious.

So, if you're planning to watch:

- Use certified solar eclipse glasses

- Attend a safe, organised viewing event

- Watch a trusted livestream

- Use the pinhole projection method to view the eclipse indirectly

- Follow appropriate guidance if photographing the eclipse

At the same time, remember:

- Don’t look directly at the Sun with your naked eyes

- Don’t rely on ordinary sunglasses

- Don’t look through your phone or camera at the Sun

- Don’t use binoculars or telescopes without appropriate solar filters

- Don’t use smoked glass, stacked sunglasses or other improvised filters

There are lots of ways to experience the eclipse without putting your eyesight at risk.

Enjoy the spectacle. Protect your Sight!

Guidance adapted from the Irish College of Ophthalmologists.

Today, on International Youth Day, we're celebrating the incredible young people across our global retinal community who...
12/08/2026

Today, on International Youth Day, we're celebrating the incredible young people across our global retinal community who continue to inspire, advocate, innovate and support one another.

Over the past year, we've heard powerful conversations about navigating education, careers, mental health, and life with a retinal condition. Last year's Retina International Youth Conference reminded us just how valuable it is to create spaces where young people can connect, learn and share their experiences.

🎥 If you missed it, or would like to revisit it, you can watch last year's Youth Conference recording here: https://youtu.be/un-bdSPrn1M?si=Ya8SJbbL12gppa5w

But this is only the beginning...

This year, we're working on something even bigger. Alongside our upcoming Youth Conference, we're developing new ways for young people to stay connected, share experiences and build a stronger international community throughout the year.

We're looking forward to sharing more very soon!

Happy from all of us at Retina International! 💙



[ID: Participants of the Retina International Youth Council at the 2024 RIWC in Ireland, celebrating community and youth leadership. Above the image: “Happy International Youth Day” and features the Retina International Youth Council logo at the bottom.]

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