E-Newsletter September 2026

We are very much looking forward to welcoming everyone to the Retina UK Professionals’ and Annual Conferences this weekend!

It promises to be an inspiring and informative couple of days, bringing together the inherited sight loss community to learn, connect and hear about the latest developments in research, support and services.

If you are registered to attend but can no longer join us, please let us know as soon as possible by email at [email protected] or phone our office at 01280 821334 so that we can update our records accordingly.

We can’t wait to see you there!

Are you or someone you care for living with Leber Congenital Amaurosis Type 10? (LCA10/ CEP290-associated)

Green Minds have asked us to share the following opportunity. The study involves a 60-minute online interview to better understand the experiences, perspectives, and needs of people living with LCA10 and their caregivers.

A £128 thank you payment will be provided to each participant upon successful completion of the interview, as a token of appreciation for their time and contribution. Please be aware that there are a limited number of participants required at this stage, and only participants who meet the study criteria will be contacted for the interview.

If you are a caregiver, you can register your interest here: https://forms.cloud.microsoft/r/Ma0AS6MfYT

If you are an individual aged 18yrs+ with LCA10 please register your interest here: https://forms.cloud.microsoft/r/HcvZUab0gn

If you have any questions or would like any further information please contact [email protected] or visit www.greenmindsinsights.com

Thanks for your support. Retina UK will receive a donation for help provided in reaching participants for interviews.

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? Whatever you decide, your fundraising and awareness-raising will support Retina UK on World Sight Day (8 October) and beyond.

Contact Maria on 07736 968158 or register your interest on the website.

World sight day is also Retina UK day 8 October 2026!

British Blind Sport wants to hear from blind and partially sighted people across the UK about their sport and physical activity preferences, particularly those who are currently inactive or only mildly active.

The feedback gathered will help shape future sports opportunities, events and partnerships for the sight loss community.

Complete the survey by 3 November 2026:
www.britishblindsport.org.uk/forms/view/sportpreferences

The research also includes focus groups taking place in Manchester, Coventry, Warwickshire, Birmingham, Liverpool, Preston, Leeds and Cardiff. To find out more, contact Dr Shamira Naidu-Young at [email protected].

Lots is happening behind the scenes as we continue to strengthen volunteering at Retina UK.

• Annual Conference: We’re looking forward to meeting both current and new volunteers at this year’s conference and celebrating your contribution at our Volunteer Celebration Meal in the evening.
• Volunteer training event: With the agenda now finalised, we’re excited to welcome volunteers to Sunday’s training event to share updates, develop skills and discuss future plans.
• Help test our new volunteer platform: We’re exploring new systems to improve access to volunteering opportunities, training, communications and support. If you’d like to help test potential platforms and share feedback, contact [email protected].
• Volunteer journey review: We’re reviewing the volunteer experience, from onboarding and training through to support, recognition and future opportunities.
• Have your say: We always welcome feedback and suggestions. Contact [email protected] with your ideas.

Researchers from Moorfields Eye Hospital and the University College London (UCL) have asked us to share this opportunity to participate in a study to gain a better understanding of health, lifestyle and attitudes of people living with Usher syndrome.

It is hoped that the results of the survey will help to improve healthcare services provided to people with Usher syndrome. The survey is open to anyone aged over 18 years with a diagnosis of Usher syndrome. Taking part involves completing an online survey which takes approximately 30-40 minutes. Participation is voluntary and all responses are confidential and anonymous.

We would greatly appreciate your help with this study. Please forward this survey to any other members of your family or friends who are affected by Usher syndrome. Please complete this survey by October 31st. 

If you have any questions please contact Dr Paulina Ocieczek on [email protected].

You can find more information and access the survey using this link: https://qualtrics.ucl.ac.uk/jfe/form/SV_7TIv2p

Dorset & Southwest Local Peer Support Group
Tuesday 22 September – 7pm to 8pm – Online
Please come and join facilitator Suzanne and the group for their latest online catch up where we are pleased to welcome our guest speaker Tricia Sail, winner of BBC’s Race Across the World 2023.

‘Talking’ Tech Peer Support Group
Thursday 24 September – 7pm to 8pm – Online
Please come and join Anna & Ellie for a special focus group session where we are delighted to welcome our guest speaker Ebony Hemmings, Founder of a startup tech company called Tekfluence AI who are developing a pair of AI smart vision glasses designed for the V.I community.

Women’s Peer Support Group
Tuesday 29 September – 7pm to 8pm – Online
Please come and join facilitators Danielle & Perm for their latest meet up where we are delighted to welcome our guest speaker Tilly Dowler, The Blind Stylist.

‘Talking’ Travel Peer Support Group
Tuesday 6 October – 7pm to 8pm – Online
Come and join facilitators Richard & Rachael for our latest meeting to hear from our guest speakers Dee Jones & Steve Hayward, Trustees at Sense Adventures.

National Peer Support Group
Thursday 8 October – 7pm to 8pm – Online
Please come and join us for our Autumn meeting where ‘This is Your Day to Have Your Say’, where we will be celebrating both World Sight Day and Retina UK Day.

*Save the Date* – ‘Talking’ Books Peer Support Group
Wednesday 21 October – 7pm to 8pm – Online
Please come and join facilitators Cindy and Jane for our latest meeting and book review.

West Midlands Local Peer Support Group
Tuesday 27 October – 7pm to 8pm – Online
Please come and join facilitator Perm and the group for their latest online meeting where we welcome our inspirational guest speaker, Shazia Begum.

‘Talking’ Home & Garden Peer Support Group
Tuesday 3 November – 7pm to 8pm – Online
Please join facilitators Brian & Steve where we invite you to celebrate National Homemaker Day with us by sharing your tips, hints & advice on how we can make our home & garden easier to manage.

*Save the Date* Tyne & Wear / Northern Alliance Peer Support Group
Saturday 19 December – 12pm to 5pm – In-person
Please come and join Colin and the group for their Christmas get together at the Tyneside Irish Centre in Newcastle with lunch courtesy of the Blind Baker as well as a festive raffle. More information will be available on our website soon.

For more information and to be kept up to date with peer support group activity please visit the Events page on our website – www.retinauk.org.uk/groups 

Stay connected… Join a WhatsApp Group!
If you are unable to make one of our many Peer Support Groups either online or in-person, then why not join one of our WhatsApp group chats? We currently have chats for the following groups: –

• ‘Talking’ Tech
• ‘Talking’ Books
• Men’s
• Women’s
• Young Adults
• Scotland
• London & Southeast
• Belfast
• Manchester
• Berkshire
• Dorset & Southwest
• South Wales

For more information on how to join a group, please contact [email protected] or call our Helpline on 0300 111 4000.

If you’re ready to go big, places are still available for the Brighton Marathon (4 April), Manchester Marathon (18 April) and Edinburgh Marathon (30 May). Prefer something shorter or a bit different? From half marathons and 5Ks to adrenaline-fueled skydives, there’s something to suit everyone.

Join #TeamRetinaUK and help us continue supporting people living with inherited sight loss across the UK – we’ll be with you every step of the way.

Find your challenge and sign up today: www.Retinauk.org.uk/challenge or get in touch with Michelle at [email protected] to find out more.