Retina UK Conference 2025

On September 19th and 20th 2025 Retina UK hosted their annual conference in London. For most this was a very inspiring occasion, with Retina UK celebrating their 50th anniversary. This was my first time attending a conference by Retina UK. 

19th September 

This was a day designated for professionals to discuss and hear about developments in within the understanding of inherited retinal dystrophies

There were talks about; developments in inherited retinal disease research, learning from lived experience, technology advancements and other things. 

20th September 

This conference was mostly attended by those who live with inherited retinal diseases and their families. 

In the morning there were many professionals discussing advances in trials for many different genes which cause inherited retinal dystrophies. Research like using stem cells to regenerate the light sensitive layer in the eye were particularly interesting, even if learning about it meant being sat still for a long time. It was a fascinating topic to learn more about as I didn’t previously understand how the trials were developed very well. 

In the afternoon there was a lived experience panel. It was great to hear from people who live with inherited retinal dystrophies. The knowledge that they were sharing was detailed and insightful. It was interesting to hear about how people have navigated the world of work with sight loss. It was also amazing to hear how accessibility to visual arts has developed to allow people with sight loss to be able to access theatres and art galleries though audio description and touch tours. Hearing stories like these allowed me to understand how I can find ways around my vision loss and still enjoy the things that I love.  

In between these sessions there was the option to visit different stalls where people from other charities or companies like Stargardt’s Connected, CURE USHER,  Sight and Sound and many more. This was a great time to ask more specific questions about topics and try a few devices at one stall that I hadn’t had a chance to try before such as the Orcam My Eye.

Having a designated time to speak one to one with the individuals who presented at the conference was really helpful. It was an opportunity to learn more about their field of expertise and what is to come in the future. Learning about the developments in technology from Google was interesting and hearing about how their Gemini AI can help people who are blind or have low vision was particularly helpful. 

Then in the evening the volunteers had a celebration dinner. Here we enjoyed great food and good company. I was able to meet many volunteers for the first time as I only joined this summer.

All of the volunteers received a special pin badge which celebrates the 50th anniversary of the charity. With this only going to volunteers it makes it even more limited edition than a Blue Peter badge! 🤭

(The image shows a pin badge with a design commemorating 50 Years of Retina UK. The badge is metallic with gold-colored accents and features two distinct sections. The upper section displays the number "50" prominently, with the word "YEARS" written in smaller text above the right side of the "0." The lower section contains the text "RETINA UK" in capital letters, enclosed within a rectangular border. The text is embossed and surrounded by a decorative frame. The badge is placed on a white background.)

To watch sessions from the conference follow the link, https://retinauk.org.uk/resources/

- NEXT DAY -  

Volunteer Training  

This consisted of splitting into groups to discuss different topics that are specific to our volunteer roles. 

It was interesting to hear from the perspective of other volunteers as to what improvements could be made to make the roles more accessible and rewarding for the volunteers. 

A post on a Retina UK Young Adults event on the O2 climb will be posted shortly. 

(This blog post was co authored, a similar story can be found on the DeafBlind Techie Blog, to read follow the link)