Ellen Moran and David Sanchez smiling to camera. They are standing in front of an ERN-EYE poster.
RI's Dr Ellen Moran attended the ERN-EYE annual meeting in Helsinki alongside RI Board Member David Sanchez. Great to see 90 experts and patient reps together advancing rare eye care across Europe. Thank you for a fantastic meeting! #ERNEYE #RareEyeDiseases #EuropeanReferenceNetworks
For a Disability Employment Guarantee as flagship initiative of the enhanced Disability Strategy
A EU Disability Employment and Skills Guarantee to help close the employment gap.
Over 125 associations call on the Commission to announce it as an action of the updated #DisabilityRights Strategy:
- Support training.
- Help with necessary adjustments.
Read: www.edf-feph.org/publications...
New Publication!
RI CEO, Avril Daly, contributed to a new article on PVDD:
🔗 link.springer.com/article/10.1007/s40123-0...
[Authors: Tariq M. Aslam, Focke Ziemssen, Anat Loewenstein, Rajesh Nair, Mhairi Thurston, Amanda Hawkins & Avril Daly]
#Ophthalmology
Audience seated at round tables watching a panel discussion on stage at the IPHA conference. Avril Daly is one of the speakers, sitting in armchairs under blue lighting with a large screen displaying the session title “Competitiveness for Equity: Shaping Europe’s Health Agenda under Ireland’s EU Presidency” at the IPHA Conference. The IPHA logo is projected on the stage curtain.
onference audience watching a large screen showing a close-up of Avril Daly speaking during the IPHA Conference. A podium beside the stage displays the conference theme “Steering Disruption,” with blue stage lighting and attendees seated in the foreground.
Great discussion at the IPHA Annual Conference in Dublin. Our CEO Avril Daly joined the panel “Competitiveness for Equity: Shaping Europe’s Health Agenda under Ireland’s EU Presidency.” Innovation, research, and access to new therapies were all discussed. #IPHA2026 #PatientVoice
Act4RED brings together patients, clinicians and researchers to improve diagnosis, care and innovation for people living with Rare Eye Disease. We’re calling to Stop the Loss of Vision and drive coordinated action for better outcomes across Europe. #Act4RED
🎧 open.spotify.com/episode/7LzF...
Black-and-white portrait of Kate. Framed in green with decorative black dots and shapes. Text below reads “#ARVO26” with the RI logo.
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.
Delighted to share that our colleague Dr Kate Fankun Cao has been selected for an oral presentation at @arvoinfo.bsky.social #ARVO2026! Her work using TILDA data highlights the links between visual acuity & cognitive health in ageing. Proud to see this important research recognised. #VisionResearch
Speaker slide for the Mapping Rare webinar. On the left is a portrait of Dr Ellen Moran. She is wearing a navy blazer over a patterned top and standing outdoors with greenery in the background. Text below the photo reads: “Ellen Moran, Scientific Programme Manager.” On the right is the Retina International logo and a text block describing Retina International as a global, patient-led organisation supporting people with inherited and age-related retinal diseases through research funding, advocacy, and education. The Rare Disease Day and Rare Diseases International logos appear at the top. A banner at the bottom reads: “Learn how we’re putting empowerment on the map! Mapping Rare: 17 February at 3 PM CET.”
Our colleague, Dr Ellen Moran, will be speaking at the Mapping Rare webinar for Rare Disease Day 2026, sharing perspectives from Retina International.
🗓️ 17 Feb 2026
🕒 3–4 pm CET
🔗 lnkd.in/db8HRPtj
English with live Spanish interpretation and multilingual captions.
#MappingRare #RareDiseaseDay
⏰ Final call! Retina International is closing applications soon for its Membership Engagement Coordinator role. Apply before 5pm, 16 Feb 2026.
Info: buff.ly/mw2Szre @retinaint.bsky.social
✨ Still time to apply! Retina International seeks a Membership Engagement Coordinator to support global members and strengthen advocacy for the retinal community.
Details: buff.ly/mw2Szre @retinaint.bsky.social
🌍 Retina International is hiring a Membership Engagement Coordinator. Join a global network supporting people affected by retinal diseases. Hybrid role in Dublin.
More info: buff.ly/mw2Szre @retinaint.bsky.social
Session info, presentation dates, and times for our #ARVO2026 abstracts will be shared soon. Excited to share this important work at #ARVO2026
#VisionResearch #MentalHealth #VisionLoss
Image 1: Portrait of Nabin Paudel. Framed in green with decorative black dots and shapes. Text below reads “#ARVO26” 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 “#ARVO26” 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.”
Two RI abstracts accepted at @arvoinfo.bsky.social #ARVO2026
Using TILDA data @tcddublin.bsky.social they show how vision loss is linked to mental health and cognition, turning lived experience into evidence that strengthens patient advocacy and care. @nabinpaudel.bsky.social @avrilbdaly.bsky.social
RI staff portraits on a yellow background. From top left; Kate, Avril, Nabin. Bottom row: Maria, Ellen, Claire. The RI logo is centred on the graphic in black.
Thank you for all of your support over 2025! Our office will be closed from today, Friday, December 19th and will reopen on Monday, January 5th.
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.
![[Image description: Dominique Sturtz, Chair of the ERN-EYE EPAG, Avril Daly, CEO RI and Prof. Helene Dollfus, Coordinator, @erneyenetwork attend the High Level Meeting (HLM) on Rare Disease Policy in Brussels on December 10th.]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:lv77yzq75a4ryjpz6bu2nc5d/bafkreic3r6xuvvyzqxn33bgoyypn3rpuavtza4haqparcv7n5b42kma5yi)
[Image description: Dominique Sturtz, Chair of the ERN-EYE EPAG, Avril Daly, CEO RI and Prof. Helene Dollfus, Coordinator, @erneyenetwork attend the High Level Meeting (HLM) on Rare Disease Policy in Brussels on December 10th.]
Today, our CEO @avrilbdaly.bsky.social, as President of @eurordis.bsky.social, is joining leaders across Europe to push for a stronger, more connected research & innovation ecosystem for rare diseases. Key discussions are highlighting the power of ERNs. #HLMRare #RareDiseases #ERN_EYE #Innovation
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 #KeepPatientsVoting.
For World Sight Day this year, our priority is to #KeepPatientsVoting.
We are proud to launch our campaign, Patient Voices: Deciding Our Futures.
Learn more: https://ow.ly/s3X250X7MoU
#WorldSightDay #PatientVoices #WSD2025
- 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)
Panellists:
- Silvia Cerolini (Eyes on the Future, Coordinator RDH12 Alliance)
- Christina Fasser (Past President, Retina International)
- Ben Shaberman (VP, Science Communications, Foundation Fighting Blindness)
Have you registered for our free World Sight Day webinar, The Patient Voice and Innovation:
🗓️ Date: October 9
⏱️ Time: 1:30 PM UK | 2:30 PM CET | 8:30 AM EDT
⌛ Duration: 1 hour
us06web.zoom.us/meeting/regi...
#Webinar #WSD2025 #FreeEvent #Ophthalmology #PatientVoice
We're looking forward to a great day of #clinicaleducation & #eyecare service delivery discussion at #EyeCareinFocus25 View programme eyedoctors.ie/eyecareinfoc... #myopia #glaucoma #cataract #eyecareteam #optometrist #optometry #eyenurse #GP #orthoptist #orthoptics #eyedoctor #ophthalmology
Are you a young person living with a retinal condition? Register today for the Retina International Youth World Conference! Saturday, September 27 at 4pm CET> us06web.zoom.us/meeting/regi... #Conference #Science #Retina #RetinaYouth
Re-Vana is pleased to announce that our CEO, Michael O’Rourke, will present at Ophthalmology Futures Forums Retina 2025 (Panel 3: Neovascular AMD) and at the EURETINA Innovation Spotlight 2025 (Rapid Fire Panel Presentation and Discussion) on Wed, Sept 3 in Paris. #OFF2025 #EIS2025
Reach out if you're in attendance and would like to learn more about our work! Our CEO, Avril Daly and our Head of Research & Programmes, Dr Nabin Paudel and our Scientific Programme Manager, Dr Ellen Moran, will also be in attendance.
A graphic of the RI team. There is text: Connect with us! Retina International at EURETINA '25. The EURETINA logo is placed underneath the text. There are three black and white headshots of staff- Dr Nabin Paudel, Avril Daly and Dr Ellen Moran. All three are looking directly to camera and smiling. The Retina International logo is placed underneath the image, bottom centre.
We're excited to attend @euretina.bsky.social!
➡️ Our abstract details:
“Can large language models improve the readability of online patient education materials on retinal diseases?”
📍 6th September 2025
🕤 10:00 – 10:06
📌Speakers' Corner 18
@avrilbdaly.bsky.social @nabinpaudel.bsky.social
Can large language models improve the readability of online patient education materials on retinal diseases?’ Hashtags: #EURetina2025. Below: ‘Oral Presentation: Dr. Nabin Paudel, Head of Research & Programmes, Retina International. 6 September 2025, 09:30–10:30 CEST.’
Large text reads: ‘People living with retinal diseases often face complex, highly technical medical information.’
Text reads: ‘Our research explores how artificial intelligence (AI), specifically large language models, can make these materials clearer, simpler, and easier to understand, improving health literacy and empowering patients in their care decisions.’
Text reads: ‘Our pilot study tested whether AI tools like ChatGPT, Claude, and DeepSeek could rewrite online patient education materials (PEMs) to be: more readable, more accessible, and better suited for all educational backgrounds.’
Join us at @euretina.bsky.social! We will be presenting our latest work, "Can large language models improve the readability of online patient education materials on retinal diseases?”
🗓 Speakers’ Corner 18: Miscellaneous
⏰ 09:30–10:30 CEST | Dr. Nabin Paudel speaking 10:00–10:06
#EURETINA #RI
A headshot of Dr Nabin Paudel. He is standing in a park and smiling to camera. The Retina International logo is placed bottom centre of the graphic.
Text in black on a green background states: Can large language models improve the readability of online patient education materials on retinal diseases. The Retina International logo is placed bottom centre of the graphic. The hashtag #EURETINA25 is placed on the graphic above the RI logo.
Save the date! Our Head of Research, Dr. @nabinpaudel.bsky.social will speak at #EURETINA2025 on AI and clearer patient info for retinal diseases.
- Sept 6, 10:00 CEST.
#Ophthalmology #AI #EURETINA25 @euretina.bsky.social
Exciting news! Our colleague Dr. @nabinpaudel.bsky.social will present at @euretina.bsky.social #EURETINA25 on using AI to improve the readability of online patient education materials on retinal diseases. Save the date! Sept 6 at 10:00 CEST
#AIinHealthcare retina-international.org/ri-euretina-...
An image of Jose Sahal on a pink background. The RI logo is centred in the image.
Text states: Retina International warmly congratulates Professor José-Alain Sahel, Co-chair of our Scientific and Medical Advisory Board, on receiving the prestigious Proctor Medal - one of the highest honors bestowed by ARVO.
Congrats to Prof. José-Alain Sahel, Co-chair of our SMAB, on receiving the @arvoinfo.bsky.social Proctor Medal for his pioneering work in retinal research.
This is one of the highest honors bestowed by ARVO - and so well deserved.
#ProctorMedal #ARVO #Award #RetinalResearch #Retina #Research
@avrilbdaly.bsky.social @nabinpaudel.bsky.social @unibonn.bsky.social @ema.europa.eu
#GeographicAtrophy #ClinicalTrials
A blue image with dark grey text, with a screengrab of the special interest group meeting participants on Zoom. The text states: RI Special Interest Group (SIG). The Retina International logo is placed at the bottom centre of the image.
Dark grey poster with blue text. Text states: Panelists: Avril Daly, Dr. Andrew Want,Dr. Maximilian Pfau, Dr. Jane Moseley. #ARVO. The Retina International logo is placed bottom centre of the graphic.
Thanks to all who joined our #ARVO #SIG on #GA trial endpoints yesterday - great insights from regulators, industry, academia & the patient community.
More multistakeholder conversations to come!