Retina UK

Understanding what happens during an optician appointment can make a real difference for people living with inherited sight loss. In this webinar, taking place on Wednesday 22 April at 7pm on Zoom, we’ll explore the vital role opticians play - from early detection and regular monitoring to low‑vision support and onward referrals.We’re delighted to be joined by Ashish Chokshi, Principal Optometrist, Optometry Lead for Medical Retina, Moorfields Eye Hospital NHS Foundation Trust, and a community optician practice owner. Ashish will share his clinical and community‑based insights into how opticians support people with inherited retinal conditions and what you can expect during appointments. We will also be joined by two of our volunteers with lived experience, who will also share what has helped them feel more confident in clinic settings, as well as why some people may feel hesitant about attending.This webinar is designed to give you practical insights, reassurance and a clearer understanding of why routine eye care matters.

In the latest episode of Meet the Professionals, we sit down with Kate, an d Eye Clinic Liaison Officer (ECLO), to explore the vital role ECLOs play in supporting people through every stage of their sight loss journey.From helping individuals navigate the emotional impact of diagnosis to offering practical guidance on registration, benefits, and local services, ECLOs are a crucial bridge between clinical care and everyday life. Kate shares her path into the sight loss sector, what a typical day looks like, and the many ways she works alongside clinicians, families, and support organisations to ensure individuals with sight loss get the support they need. Whether you’ve met an ECLO before or are hearing about the role for the first time, this conversation offers insight, and practical advice for anyone living with inherited sight loss or supporting someone who is.If you’d like to learn more about ECLO support or the services mentioned in this episode, you can contact the Retina UK Helpline on 0300 111 4000 or [email protected]. Our volunteers all have lived experience of inherited sight loss and are here to help.

The latest e-newsletter from Retina UK.

In this episode of Meet the Professionals, Lauren speaks with Richard Bounds, Vision Rehabilitation Specialist and CEO of the Rehabilitation Workers Professional Network (RWPN). Richard shares his journey into the profession, explains the vital role rehabilitation specialists play in supporting people with sight loss, and explores how RWPN champions and strengthens the workforce behind this service.Together, they discuss what rehabilitation support looks like in practice, when someone might be referred, how goals are set, and why personalised, flexible support can make such a difference for people living with inherited retinal conditions. Richard also reflects on the future of the profession and offers advice for anyone feeling unsure about reaching out for help.Whether you’re living with sight loss, supporting someone who is, or simply want to understand more about the sector, this episode offers valuable insight into the people and expertise behind rehabilitation services.

The latest e-newsletter from Retina UK.

This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2026 (Issue 189). You can download a copy in PDF and Word format on the Retina UK website: https://retinauk.org.uk/resources.Contents in this edition are as follows:A heartfelt thank you for standing with us (Tina Garvey)Staying connected: Small changes, big impactJoin us for the grand finale to our 50th anniversary year!Research news round upTwo journeys, one desertVolunteer spotlight: Building peer support in the South-WestStepping onto the career ladderGene therapy to restore and maintain visionPAID ADVERTISEMENT: Turn night into day – LunaPAID ADVERTISEMENT: New! Optaro®Thank youHave fun and make a difference for people with inherited sight lossGive the gift of hope through a regular donationDates for your diaryDonate to Retina UK this spring

In this opening episode of our Meet the Professionals series, Lauren speaks with Sian, a Genetic Counsellor supporting people living with inherited retinal conditions. Together, they unpack what genetic counselling involves, how it can help individuals and families understand their diagnosis, and what to expect from the genetic testing process.Sian discusses her background, the emotional and practical support she provides, and the types of questions people often bring to their appointments. She also explains how genetic counsellors work alongside clinicians, researchers, and organisations like Retina UK to ensure people receive the information and care they need.If you’re considering genetic testing or want to understand more about the role of a Genetic Counsellor, this episode offers clear insight.You can find out more information on genetic testing here: Unlock Genetics - Retina UK

In “Steps Through the Sand: stories from the Retina UK Sahara Trek”, you’ll hear firsthand from some of our amazing trekkers who took on this once-in-a-lifetime challenge – trekking across the vast Sahara Desert to raise vital funds and awareness for people affected by inherited sight loss.Our speakers share their personal stories, memorable moments, and the highs and lows of life in the desert, from the blazing dunes to the powerful sense of teamwork and purpose that carried them through.Whether you’re curious about taking on your own adventure, want to relive the journey, or simply love hearing uplifting stories of courage and community, this is an event not to miss.

The latest e-newsletter from Retina UK.

In this Retina UK podcast, Research Development Manager Kate Arkell is joined by Laura Taylor, Research Optometrist with the Oxford Eye Research Group, and Randa Li, Ophthalmologist at Moorfields Eye Hospital, to explain the wide range of tests used in the diagnosis and monitoring of inherited retinal diseases (IRDs).Across the discussion, Laura and Randa address common misconceptions, practical tips for preparing for appointments, and the importance of regular monitoring. The episode aims to give listeners the knowledge and confidence to understand their test results and engage actively in their care.

Joining us for an "Ask the Expert" session is Professor Marcela Votruba, Professor of Ophthalmology at Cardiff University and consultant at University Hospital Wales where she runs a genetic eye clinic.During the session, participants had the opportunity to ask questions submitted in advance as well as engage in a live Q&A. The discussion covered a wide range of topics, from personal concerns to the latest developments in ophthalmology research.Thank you to everyone who joined us and contributed to such an insightful and engaging conversation.

The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442

In this special episode of the Retina UK Podcast, Lauren is joined by actress and BBC Lifeline spokesperson Louisa Lytton to talk about the recent BBC Lifeline Appeal in support of Retina UK.Louisa opens up about her personal connection to inherited sight loss, what inspired her to champion the appeal, and the moments during filming that stayed with her. Together, Lauren and Louisa explore why raising awareness matters, how Retina UK supports individuals and families across the country, and the life-changing impact your support can have.

This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2025 (Issue 188). You can download a copy in PDF and Word format on the Retina UK website: ⁠⁠⁠⁠⁠⁠⁠RetinaUK.org.uk/resources⁠⁠⁠⁠⁠⁠⁠.Contents in this edition are as follows:A fantastic start to our Anniversary year (Tina Garvey)Keep laughingAn incredible couple of days!Research news round upTake on a challenge and help change livesTop tech newsThank youPAID ADVERTISEMENT: Navis touchpulse - Your Guide to the WorldDouble your donation to Retina UK!You don’t have to be held backPAID ADVERTISEMENT: Turn night into day – LunaGet behind us during our 50th anniversary year!Every experience counts: Insights from our Sight Loss SurveyDates for your diaryDonate to Retina UK this winter

Findings from our survey of over 600 people living with inherited sight loss.June 2025Copies of this report in plain text and PDF formats can be found on the Retina UK website: RetinaUK.org.uk/resource/retina-uk-sight-loss-survey/

In this episode we are joined by two of our fantastic fundraising team members; Joe, our Community and Events Coordinator and James, our Head of Income Generation - to give us a sneak peek at some of the exciting events and appeals we have coming up over the next year. We have lots going on as we continue to celebrate our 50th year at Retina UK, and there is something for everyone!

The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442

Retina UK is delighted to be hosting a webinar with British Blind Sport.This session will highlight how sport and physical activity can play a powerful role in boosting health, confidence and wellbeing for people living with sight loss. You’ll also hear from British Blind Sport about who they are, the support they offer, and the wide range of opportunities available through their membership, events and activities.Whether you’re already active or just looking to get started, this webinar will provide inspiration and practical advice on how to get involved.

Professor Julie Silvestri

Community members share their experiences:EmploymentSport and leisureMobility and travelDay-to-day living

James Clarke, Head of Income Generation, Retina UK

Christopher Patnoe, Head of EMEA Accessibility and Disability Innovation at Google

Speakers from AAVantgarde, Octant, Alkeus Pharmaceuticals, Sepul Bio and Beacon Therapeutics

Professor Jane Sowden, Professor of Developmental Biology and Genetics at University College London (UCL) Great Ormond Street Institute of Child Health

Professor Michel Michaelides, Professor of Ophthalmology, University College London and Consultant Ophthalmic Surgeon, Moorfields Eye Hospital

Kathy Evans, Chair of Trustees and Professor JohnMarshall MBE, Trustee, Retina UK

Michael Crossland, Senior Research Fellow, University College London (UCL) Institute of Ophthalmology and Rachel Canavan, PhD student in Psychology, UCL

Robert Henderson, Consultant Ophthalmic Surgeon, Great Ormond Street Hospital and Moorfields Eye Hospital

Paula McGrath, Deputy Chief Executive, Retina UK, leads a panel session

Tina Garvey, Chief Executive, Retina UK

Kathy Evans, Chair of Trustees, Retina UK

More information about the Professionals Conference 2025 can be found on our website: RetinaUK.org.uk/event/professionals-conference/

More information about our Annual Conference 2025 can be found on our website: RetinaUK.org.uk/event/annual-conference/

This is the audio edition of the Retina UK Newsletter,Look Forward - Autumn 2025 (Issue 187). You can download a copy in PDF and Word format on the Retina UK website: ⁠⁠⁠⁠⁠⁠RetinaUK.org.uk/resources⁠⁠⁠⁠⁠⁠.Contents in this edition are as follows:Tribute to Lynda CantorConferences are in the air (Tina Garvey)Together we can: Collaborating with Retina UKRegister now for our flagship conferencesJohnson & Johnson gene therapy – what happensnow?PAID ADVERTISEMENT: Irwin MitchellA lasting legacyVolunteer spotlight: Elizabeth BaioShow your support in our 50th anniversary yearDates for your diaryPAID ADVERTISEMENT: Northern BalletPAID ADVERTISEMENT: Sight and Sound TechnologyThank youVision in a dish: How retinal organoids couldaccelerate the search for a cureOrganise a fantastic fundraiser this autumn!Spread cheer and raise funds

In this special episode of the Retina UK Podcast, we’re giving you an exclusive preview of our upcoming Professionals’ Conference and Annual Conference, taking place on 19–20 September 2025 in London and online.Whether you're a clinician, researcher, professional in the field, or someone living with inherited sight loss, our conferences offer something for everyone. Tune in to hear directly from some of our expert speakers as they share insights into their sessions, what to expect, and why you won’t want to miss out.From the latest research updates to personal stories and practical advice for everyday life, this episode is your guide to two days of learning, connection, and community as we celebrate 50 years of Retina UK.To find our more information and register for our conferences, please follow the links below:Professionals' Conference: Retina UK Professionals’ Conference 2025Annual Conference: Retina UK Annual Conference 2025

Join us for an insightful conversation about building a career while living with sight loss. This webinar is designed for young people navigating their future careers, offering real-life insights, practical tips, and inspiration from those who are currently there.Hosted by Lauren Osborne-Lewis, this session features three brilliant guests – Ryan Taylor, Lauren Rawlinson, and Aysha Ahmed, who share their personal journeys into the world of work. They talk about the challenges they’ve faced, the strategies that helped them succeed, and the support that made a difference.Whether you’re at school, thinking about college or university, or wondering about your first job, this webinar will give you the chance to hear from peers who understand the unique experiences of sight loss in the workplace.If you would like support with your career, you can contact our Helpline on 0300 111 4000. 

The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442

Look Forward newsletter from Retina UK - Spring 2013. Part of our 50th Anniversary archive.

In this episode of the Retina UK podcast, we're handing the mic to the team! Recorded during a recent staff meeting, this episode gives you the chance to meet the people behind the scenes at Retina UK. You'll hear from (almost) everyone on the team as they share a bit about who they are, what they do, and why they’re passionate about supporting those affected by inherited sight loss.Hosted by Lauren, our Digital and Events Senior Coordinator, this episode offers a unique insight into the work that goes on across the charity; from events and communications to research and support services.Whether you're already part of the Retina UK community or just getting to know us, this is a great opportunity to connect with the people working hard to make a difference every day.

This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2025 (Issue 186). You can download a copy in PDF and Word format on the Retina UK website: ⁠⁠⁠⁠⁠RetinaUK.org.uk/resources⁠⁠⁠⁠⁠.Contents in this edition are as follows:Help us to mark our 50th anniversaryWin up to £1,000 cash in our annual raffleRegister now for our flagship event of the yearLooking for clarity with genetic testingOur 2024 in numbersHow genetic testing can support researchAnnual General Meeting noticeSupport our anniversary appealGet involved in our anniversary yearCongratulations to our 2025 TCS London MarathonPaid advertisements: New OrCam Read 3Dates for your diaryThank youRegister now for our Professionals' ConferenceSpotlight on the Belfast 'Bumpers'Support our work

Find out more about the difference we made in 2024.This report is also available in PDF and plain text (Word) formats on the Retina UK website: RetinaUK.org.uk/resource/impact-report-2024/

In this episode, we're joined by two of our wonderful volunteers, Kim and Annemarie. They chat with our Communications Manager, Jane, about their experiences with sight loss, what inspired them to volunteer with Retina UK, whilst also discussing what volunteering means to them . They also talk about all the exciting things they get up to in their peer support group meetings.We hope you enjoy the conversation!

We know a lot of people are concerned about the proposed changes to the Personal Independence Payment (PIP) that were announced at the end of March.  Much of the proposal forms part of a wider consultation with the Department for Work and Pensions.Hear from our Special Project Lead, Matthew Carr, in this webinar about Influencing with Retina UK to learn more about the proposals, Retina UK’s position and how you can make sure your voice is heard by your MP and in the consultation.  Matt also talks about different ways that you engage with politicians on both a local and a national level.

The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monthly or quarterly direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442

In this podcast, our Research Development Manager, Kate Arkell, talks to health economics researcher Rebecca Rosi from Bangor University, who is aiming to investigate which support services are available and which are most beneficial to people living with RP.

The London Marathon 2025 is fast approaching and our #TeamRetinaUK runners are well underway with their training and fundraising!In this inspiring session, our marathon runners share their personal stories, motivations, and experiences as they take on this iconic challenge to raise awareness and vital funds for retinal conditions.Hear firsthand how they are preparing for the marathon, the unique connection they have to Retina UK, and why they’re going the extra mile to help us support research and improve the lives of those affected by inherited retinal diseases.Don’t miss out on this chance to be inspired by their determination, passion, and commitment to making a difference. Whether you’re an avid runner, a supporter of Retina UK, or simply looking for motivation, this webinar is for you!

The latest e-Newsletter from Retina UK.Please consider donating to Retina UK through a monhtly or quartely direct debit if you can. Regular donations provide a reliable source of income to help us to plan effectively for the future. Visit https://retinauk.org.uk/get-involved/donate/ to sign up, or, if you prefer, call us on 01280 821442

Join us for our next webinar which is an exploration of a community members experiences of genetic testing with input from a genetic counsellor.If you would like more information on genetic testing, you can head to our website where you will find guidance on how genetic testing may help you and your family discover more about your inherited sight loss condition and how to unlock choices. The page can be found here: https://retinauk.org.uk/genetics/If you would also like to watch Rob's video, that can be found here: https://retinauk.org.uk/genetics/genetic-testing/

Join Lauren as she chats with Paula McGrath, Deputy CEO of Retina UK, about the 2025 Sight Loss Survey - why it matters, how your voice can drive real change, and how you can take part.Every three years, we carry out this survey to ensure our work continues to meet the needs of our community. Your voice matters, and we need your input to shape the future of our services, campaigns, and advocacy efforts for those living with inherited sight loss. The survey should take approximately 40 minutes. You can either complete it online by visiting RetinaUK.org.uk/survey, or call our office on 01280 821334 to book an appointment with a member of our team to complete the survey on your behalf over the telephone. The deadline for completed surveys is Friday 25 April 2025. If you have any questions, please email [email protected].

This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2025 (Issue 185). You can download a copy in PDF and Word format on the Retina UK website: ⁠⁠⁠⁠RetinaUK.org.uk/resources⁠⁠⁠⁠.Contents in this edition are as follows: Tell us about you – Tina Garvey You can influence positive change A golden opportunity for your workplace Marking 50 years of Retina UK Experimental therapy by Retina UK funded researchers leads to ‘life changing improvements’ A passion for genetic engineering Dates for your diary With opportunity, support and determination, anything can happen Research round-up From bake sales to challenges – get involved in 2025! Finding a place to thrive Thank you Help us raise awareness and vital funds in 2025 Paid Advertisement from: Seable Holidays for Blind and Partially sighted