iiinova — where your digital self keeps evolving

retinauk.bsky.social @retinauk.bsky.social · 03/10/2026

Thank you to everyone who joined our volunteer training on 20 September! The discussions and insights shared were invaluable. Together, we're building a stronger volunteer community to make an even greater difference for people living with inherited sight loss.

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retinauk.bsky.social @retinauk.bsky.social · 30/09/2026

On 8 October, join our community to raise awareness and funds for people with inherited sight loss. Bake, walk, run, quiz, collect or take on a challenge with friends, family or colleagues. Your support helps Retina UK provide vital services and fund life-changing research.

a photo of one of last years supporters fundraising via a concert with the caption 'Retina UK Day is on October 8, register your interest and fundraise for us however you can!'

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retinauk.bsky.social @retinauk.bsky.social · 24/09/2026

Beacon Therapeutics has announced positive top-line results from its phase 2/3 VISTA clinical trial investigating laru-zova, an experimental gene therapy for people with X-linked retinitis pigmentosa (XLRP). The results mark an important milestone for the condition.

Green speech bubble on navy: Beacon VISTA gene therapy trial shows positive results for X-linked retinitis pigmentosa

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retinauk.bsky.social @retinauk.bsky.social · 21/09/2026

A huge thank you to everyone who joined us for the Retina UK Professionals' and Annual Conference 2026. To our delegates, speakers, volunteers, exhibitors and sponsors: thank you for helping make the weekend such a success. Now it's time for a well-earned cuppa! 💙 #RetinaUKConf

Mug and open pack of chocolate-chip cookies with assorted wrapped candies (Snickers, Bounty and Malteasers) on an office desk

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

👏 That's a wrap on Retina UK Professionals' Conference 2026! A huge thank you to our speakers, sponsors, exhibitors, volunteers and delegates. Together we've shared knowledge, strengthened connections and explored new ideas across the inherited sight loss sector. #RetinaUKConf

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

This afternoon's research participation session explored the value of involving people with inherited sight loss throughout the research process. When research is shaped by the community it serves, outcomes are stronger, more relevant and more impactful. #RetinaUKConf

Three panelists seated on stage in front of a large architectural mural beside a lectern displaying a conference survey sign.

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

This afternoon, in person delegates are taking part in specialist workshops tailored to their roles. Covering topics including research participation, inherited retinal conditions, family dynamics, experiential learning and wellbeing. #RetinaUKConf

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

It's lunchtime at the Retina UK Professionals' Conference! A fantastic opportunity for delegates to connect with colleagues, exchange ideas and continue the conversations sparked by this morning's sessions. We'll be back shortly with our afternoon workshops. #RetinaUKConf #Networking

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

One of the most valuable parts of today has been hearing directly from people with lived experience. Thank you to our community panel for sharing honest insights into inherited sight loss and helping professionals better understand the people they support. #RetinaUKConf

Panel discussion on stage with seated speakers and a guide dog beside a podium; a man stands at right in a conference room.

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

Communication is a vital part of delivering high-quality care. Thank you to our speakers for exploring a practical framework for approaching difficult conversations, helping professionals navigate sensitive discussions with confidence, empathy and compassion. #RetinaUKConf

Audience at a panel discussion with speaker at a podium beneath a large circular ceiling light and RETINA UK banners.

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

Time for a quick break! ☕ This morning we've explored assistive technology, AI and genetics conversations, with plenty of thought-provoking discussion along the way. What's been your highlight so far? #RetinaUKConf

Cup of milky tea beside a glazed cinnamon roll in a pink bowl on a desk with a keyboard

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

How can we strengthen genetics conversations in inherited retinal disease care? Our speakers are exploring clinical and community perspectives to help professionals support informed decisions and improve patient experiences throughout the genetics journey. #RetinaUKConf

Four panelists seated onstage next to a RETINA UK banner and lectern, with a large grayscale domed-architecture mural behind them.

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

Technology can transform independence, but how do we turn innovation into everyday impact? Our opening panel explored assistive technology, AI and accessibility, highlighting how the right tools can support people with inherited sight loss. #RetinaUKConf

Panel discussion with six seated speakers on stage facing an audience under a large circular ceiling light

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

CEO Welcome A warm welcome from our CEO, Tina Garvey, has officially opened Retina UK Professionals' Conference 2026. We're looking forward to a day of learning, discussion and collaboration across the inherited sight loss sector. #RetinaUKConf

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retinauk.bsky.social @retinauk.bsky.social · 18/09/2026

👋 Welcome to Retina UK Professionals' Conference 2026! Today we're bringing together professionals from eye health, rehabilitation, research and the sight loss sector to share expertise, explore new developments and learn from lived experience. We're delighted to have you with us! #RetinaUKConf

People chatting and visiting exhibition tables in a modern lobby with large windows and a black slatted ceiling

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retinauk.bsky.social @retinauk.bsky.social · 16/09/2026

A huge thank you to our sponsors for supporting Retina UK's upcoming Professionals' Conference and Annual Conference. We're grateful to MeiraGTx, our headline sponsor, and to Aavantgarde, Alkeus and Belite Bio for helping make these events possible. #RetinaUKConf

Logos and "Thank you to our sponsors!" banner featuring Belite Bio, MeiraGTx, Aavantgarde, and Alkeus Pharmaceuticals.

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retinauk.bsky.social @retinauk.bsky.social · 14/09/2026

If you are a UK taxpayer please consent to gift aid today! 25% more can be added to your donation to at no extra cost to you #TickTheBox #RetinaUK #GiftAid

a navy background with the caption ''Consent to Gift Aid and add 25% to your donation!''

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retinauk.bsky.social @retinauk.bsky.social · 11/09/2026

A huge thank you to the organisations exhibiting at our Professionals' and Annual Conference next weekend 👏 We're delighted to welcome Sight and Sound Technology, Alkeus Pharmaceuticals, Thomas Pocklington Trust, Belite Bio, Cure Usher Syndrome, AAVantgarde, Stargardt's Connected and Calibre Audio.

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retinauk.bsky.social @retinauk.bsky.social · 08/09/2026

We have had over 55 supporters win a cash prize playing the Retina UK lottery, for only £1 a week you could be next. Join our lottery and support Retina UK today: retinauk.org.uk/get-involved/donate… #RetinaUK #Lottery

A photo of lottery balls with the caption ''For just £1 you could have the chance to win £25,000! Join the Retina UK lottery today!''

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retinauk.bsky.social @retinauk.bsky.social · 04/09/2026

Could you organise a bake sale, a coffee morning, a fitness challenge, a quiz night, or a non-uniform day? Maybe you and your friends, family members or colleagues could take on a group challenge? Contact Maria on 07736 968158.

People at a fundraising dinner with balloons; asks for support for Retina UK Day on Oct 8.

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retinauk.bsky.social @retinauk.bsky.social · 03/09/2026

RTx-015 is an investigational optogenetic gene therapy for advanced RP and choroideremia. It aims to make remaining retinal cells light-sensitive after photoreceptor loss. A Phase 1 trial is assessing safety and dosing. Further testing and regulatory approval are needed before wider use.

Green speech bubble with headline: RTx-015: Exploring optogenetic gene therapy for retinitis pigmentosa (RP) and choroideremia

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retinauk.bsky.social @retinauk.bsky.social · 31/08/2026

This month we are celebrating Stephen Goulding, one of our Helpline Volunteers. By sharing his time, knowledge and experience, Stephen helps provide vital support to people navigating inherited sight loss. We are so grateful for volunteers like Stephen. 💙

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retinauk.bsky.social @retinauk.bsky.social · 26/08/2026

This month we’re shining a light on Anjani, one of our Telephone Helpline volunteers. Anjani supports people affected by inherited sight loss when they need it most. Whether offering information, guidance, or simply a listening ear, Anjani helps ensure no one feels alone on their journey.

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retinauk.bsky.social @retinauk.bsky.social · 24/08/2026

Are you deaf or hearing impaired and interested in joining our Annual Conference, but worried about accessibility Whether you attend in person or online, BSL interpreters will be available throughout the event. Register your place today: retinauk.org.uk/event/annual-confer…

British Sign Language interpreter signing passionately at the Retina UK Professionals' Annual Conference. Caption reads "BSL interpreters at the Retina UK Professionals' and Annual Conference 2026".

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retinauk.bsky.social @retinauk.bsky.social · 20/08/2026

IBEC researchers developed light-activated photoswitch drugs that restored functional vision in blind mice and zebrafish. By enabling surviving retinal cells to detect light, they bypass damaged photoreceptors. Eye drop or injection delivery could provide useful vision in severe sight loss.

Speech-bubble headline: Seeing the light: scientists use photoswitch drugs to restore vision in animal study

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retinauk.bsky.social @retinauk.bsky.social · 19/08/2026

Perm volunteers with Retina UK because it aligns with her values and faith. She is passionate about uplifting others and supporting underrepresented communities, finding purpose in helping people feel seen, heard and empowered.

Perm smiles at the camera. Below a blue blurred backgorund with the white text "I volunteer to uplift others and stand with underrepresented communities because my values, my faith and my humanity all align with Retina UK".

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retinauk.bsky.social @retinauk.bsky.social · 18/08/2026

✨ Speaker Spotlight – Annual Conference #4 ✨ Join us for “Income to Impact: The Difference You Can Make.” Hear inspiring stories from Retina UK fundraisers and discover how their support helps fund services, research and advocacy for people affected by inherited sight loss.

Retina UK Annual Conference speaker spotlight graphic with a dark blue background and pink accents. The headline reads “Income to Impact: The Difference You Can Make.” The graphic promotes a session featuring stories from Retina UK's fundraisers and highlighting the impact fundraising has on supporting people affected by inherited sight loss.

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retinauk.bsky.social @retinauk.bsky.social · 17/08/2026

By joining our lottery you can have an incredibly fun way of supporting Retina UK. 🎫 For just £1 you can be in with a chance of winning £25,000 every week. Join our lottery today: retinauk.org.uk/get-involved/donate… #Lottery #RetinaUK

Retina UK lottery ad with colorful numbered balls, with text ''Become a Retina UK lottery player to have a chance of winning £25,000!''

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retinauk.bsky.social @retinauk.bsky.social · 16/08/2026

Thinking about joining us at this year’s Annual Conference? “The conference was so well organised… I felt very well looked after.” Join us on 19 Sept in Birmingham or online. Free to attend. Register: retinauk.org.uk/event/annual-confer… #RetinaUK #RetinaUKConf

Conference audience with green quote "“The conference was so well organised and the helpers/staff were so kind and and thoughtful. I felt very well looked after and I had plenty of opportunity to talk to the experts.”

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retinauk.bsky.social @retinauk.bsky.social · 15/08/2026

Gift Aid can be vital for charities such as Retina UK. 25% more can be added to at no extra cost to you 💙 If you are a UK taxpayer please consent to gift aid today! #TickTheBox #RetinaUK #GiftAid

a navy background with the caption ''Add 25% to your donation by declaring yourself for Gift Aid!''

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retinauk.bsky.social @retinauk.bsky.social · 14/08/2026

✨ Speaker Spotlight – Annual Conference #3 ✨ Join us for “From Innovation to Independence: Assistive Technology for Inherited Sight Loss.” Discover how technology, including AI, can support greater independence, with insights from experts and people with lived experience.

Retina UK Annual Conference speaker spotlight graphic with a dark blue background and pink accents. The headline reads “From Innovation to Independence: Assistive Technology for Inherited Sight Loss.” Listed speakers are Barrie Lane, Advisor at Beacon Centre; Kieth Dear, Tech Advisor at Sight for Surrey; Mark Baxter, Information and Support Coordinator at Retina UK; and Anna Holloway and Ellie Dowdy, Retina UK Tech Peer Support Group volunteers.

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retinauk.bsky.social @retinauk.bsky.social · 13/08/2026

Early clinical trial results for CNS10-NPC cell therapy in retinitis pigmentosa are promising. Transplanted cells survived in the retina for at least a year, vision remained stable, and treatment was well tolerated. Future studies will assess long-term protection against vision loss.

One-year survival of transplanted cells signals progress in early retinal regeneration studies.

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retinauk.bsky.social @retinauk.bsky.social · 10/08/2026

✨ Speaker Spotlight – Annual Conference #2 ✨ Join us for “The Participant Perspective – Reflections on Taking Part in Clinical Studies.” Hear from people with lived experience and clinical experts about research participation and its impact on the inherited sight loss community.

Annual Conference speaker spotlight graphic with a dark blue background and pink accents. The heading reads “The Participant Perspective – Reflections on Taking Part in Clinical Studies.” Listed speakers are Tina Garvey, Chief Executive of Retina UK; Professor Martin McKibbin, Consultant Ophthalmologist at the University of Leeds; James Moore, who is living with inherited sight loss; Bhavna Tailor, Chief Executive of Stargardts Connected; and Ethan Tailor, who is living with inherited sight loss

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retinauk.bsky.social @retinauk.bsky.social · 07/08/2026

Every step, mile, and moment of determination has the potential to make a real difference. Fundraising for Retina UK will help ensure that more people can access the care, services, and support they need when it matters most 💙. #RetinaUK

Jonny says Retina UK's funding will improve understanding of RP and treatments; he's tackling the Three Peaks challenge. Quote: ‘’The research that Retina UK funds will lead to a better understanding of RP and accelerate the search for treatments for the future. I'll be taking on the three peaks challenge with my girlfriend and her family’’ Jonny

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retinauk.bsky.social @retinauk.bsky.social · 06/08/2026

✨Speaker Spotlight – Annual Conference #1 ✨ Join us for “Understanding Clinical Trials and Potential New Therapies – What's in the Pipeline?” Hear from biotechnology leaders about clinical trials, emerging therapies and the latest developments in inherited retinal disease research.

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Retina UK Annual Conference speaker spotlight graphic with a dark blue background and pink accents. The headline reads “Understanding Clinical Trials and Potential New Therapies – What’s in the Pipeline?” The graphic highlights a panel discussion with representatives from biotechnology companies Sepul Bio, Alkeus and AAVantgarde,

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retinauk.bsky.social @retinauk.bsky.social · 05/08/2026

Text donations are a great simple way to support Retina UK. To make a text donation of £10 to Retina UK, text RETINAUK to 70450. Texts will cost £10 plus one standard network rate message. Text us today and support those living with inherited sight loss. #RetinaUK #TextToDonate

a photo of someone sending a text with the caption ''You can donate to Retina UK via text!''

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Reposted by @retinauk.bsky.social

NIHR Biomedical Research Centre: Moorfields @moorfieldsbrc.bsky.social · 16/07/2026

@retinauk.bsky.social is hosting a free, CPD-accredited Professionals’ Conference on Friday 18 Sept, bringing together colleagues from across the eye health and sight loss sector. Where: Birmingham or online Cost: Free to attend 🔗 Register: retinauk.org.uk/event/profes...

retinauk.org.uk

Retina UK Professionals’ Conference 2026

The Retina UK Professionals’ Conference is aimed at anyone who works with our community in a professional capacity.

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retinauk.bsky.social @retinauk.bsky.social · 28/07/2026

Steve volunteers with Retina UK because giving back is personal to him. He finds it rewarding and values the meaningful connections he builds, helping others feel part of a supportive community. Steve’s story is one of connection, purpose and the people who inspire him to keep showing up.

Steve, wearing glasses and a blue sweater, smiles while talking with another person who has short blond hair, glasses, and a patterned sweater. They are seated with other people blurred in the background. Text on the image reads: “My volunteer role is incredibly rewarding, allowing me to give back to the community and build meaningful connections along the way.”

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retinauk.bsky.social @retinauk.bsky.social · 23/07/2026

Adding gift aid means your donation can mean so much to charities. 25% more can be added to at no extra cost to you 💙 If you are a UK taxpayer delcare for consent to gift aid today! #TickTheBox #RetinaUK #GiftAid

a navy background with the caption ''If you are a UK taxpayer, declare yourself for gift aid today and add 25% to your donation!''

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retinauk.bsky.social @retinauk.bsky.social · 22/07/2026

This month we’re celebrating Lisa Taplin, one of our Email Helpline volunteers. With empathy, clarity, and dedication, Lisa offers guidance, reassurance, and practical information to anyone reaching out with questions about inherited sight loss. Thank you, Lisa.

Green background with a picture Lisa smiling at the camera wearing a light blue patterned t-shirt. Above is the curved text "Volunteer Spotlight" and below is a blue box with the white text "Lisa Taplin”.

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retinauk.bsky.social @retinauk.bsky.social · 15/07/2026

🎉 We’ve passed the @AMRC Expert Review Audit! Meeting AMRC's six principles of expert review confirms that we use robust and rigorous research funding processes, helping us to fund the best research and driving better health outcomes for our community.

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Reposted by @retinauk.bsky.social

NIHR Biomedical Research Centre: Moorfields @moorfieldsbrc.bsky.social · 02/07/2026

Do you support someone living with an inherited sight loss condition? @retinauk.bsky.social are running a free CPD-accredited Professionals’ Conference on Friday 18 September. Where: Birmingham or online. Register here for free: RetinaUK.org.uk/prof-conf

retinauk.org.uk

Retina UK Professionals’ Conference 2026

The Retina UK Professionals’ Conference is aimed at anyone who works with our community in a professional capacity.

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Reposted by @retinauk.bsky.social

SeeAbility @seeability.bsky.social · 30/06/2026

Our friends at @retinauk.bsky.social are hosting their free annual conference on 19 September. If you're affected by retinal sight loss, join in person or online for research updates, advice and support. retinauk.org.uk/event/annual-confer…

Retina UK Annual Conference 2026 poster: 19 September 2026, Birmingham, free, with website and photo of attendees.

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retinauk.bsky.social @retinauk.bsky.social · 14/07/2026

Joining our lottery is a fantastic and fun way of supporting Retina UK. 🎫 For just £1 you can be in with a chance of winning £25,000 every week. Join our lottery today:https://retinauk.org.uk/get-involved/donate/lottery/ 💰 #Lottery #RetinaUK

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retinauk.bsky.social @retinauk.bsky.social · 13/07/2026

Our lived experience panel gives people with inherited sight loss the opportunity to share their experiences, influence research, and help improve services for others. If you want to use your voice, we’d love to hear from you: retinauk.org.uk/get-involved/lived-…

Picture of research with a green glove. The quote overlays the image: "I have been part of the lived experiences panel for over a year and feel privileged that I have something to share with others which may be of interest and/or value. This is not just about my experiences, learning or adaptability but also about improvements in accessibility and an easier life! If one person, at least, benefits from my words then I have fulfilled my goal."

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retinauk.bsky.social @retinauk.bsky.social · 10/07/2026

Taking on a challenge is no small feat, but the impact goes far beyond the finish line. 🌟 Supporters who fundraise for Retina UK help raise vital funds that will support our work and the people at the heart of everything we do. We're so grateful for their dedication, generosity, and commitment. 💙

Selfie of a man by a rocky coast with a quote: "‘’Retina UK offer great support with your fundraising and a multitude of ideas to try. There's a Strava running club too which is a great way to keep in touch with other runners and see how they are getting on’’ Angus"

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retinauk.bsky.social @retinauk.bsky.social · 06/07/2026

We have membership with the Victoria and Albert museum in Dundee available of as one of our prizes for our online auction. Get bidding now to secure yourself this incredible prize: retinauk.org.uk/get-involved/fundra… #OnlineAuction #VictoriaAlbertMuseum

a photo of an auction taking place with the caption with the caption ''Prize number four is a membership at the Victoria and Albert Museum (Dundee) . Start your bidding now so you don’t miss out!!'

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retinauk.bsky.social @retinauk.bsky.social · 03/07/2026

Join us on 30 July for our next webinar featuring four young adults sharing their experiences of living with inherited sight loss. 👉 retinauk.org.uk/event/webinar-livin…

Navy background with title (above) of webinar on the right hand side. Below is a picture of a white clock with “7pm” to its right and a calendar icon (square with a tick inside) with “30 Jul” to its right. On the right is a picture of our young adults white water rafting.

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retinauk.bsky.social @retinauk.bsky.social · 02/07/2026

Support our amazing fundraisers as they go the extra mile for Retina UK! 👏 Whether they're walking, running, jumping, or taking on a personal challenge, every donation helps them make an even bigger impact.💙 #RetinaUK #Fundraising

a photo of a Retina UK supporter doing the tough mudder challenge with the caption ''Support our fundraisers and donate today!''"

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