Supporting professionals supporting patients with sight loss
February is Retinitis Pigmentosa Awareness Month. But what is retinitis pigmentosa (RP) and who are Retina UK?
Retina UK is a national charity (registered charity number 1153851). We offer information and support to people affected by inherited sight loss to enable them to lead better lives today and fund medical research to accelerate the search for treatments for the future. We also support professionals working with them.
“Your volunteers gave me hope in the future at a time when I really struggled to see it, so I will be forever grateful. It’s amazing how what is just one of many conversations to one person, may be a conversation that the other person holds dear forever. Thank you all so much,” Retina UK service user.
What is inherited sight loss?
Inherited progressive sight loss is caused by a range of rare genetic conditions. We specialise in those which affect the retina, including:
• Achromatopsia
• Choroideremia
• Leber congenital amaurosis (LCA)
• Retinitis pigmentosa (RP)
• Stargardt disease
• Usher syndrome
Inherited retinal dystrophies (IRDs) are the most common cause of sight loss in the working age population of the UK, affecting tens of thousands of people. Diagnosis can be made at any age and leads to partial or full loss of sight.
How we can support you in your role
Whether you are a professional looking for practical information for yourself, or practical or emotional support for your clients, online, by phone or face-to-face, we’re here to help. All of our services are free to access, and are offered in a range of accessible formats.
Events
We hold events online and face-to-face, including our CPD accredited Professionals’ Conference. We also organise webinars for professionals and those living with inherited sight loss.
2025 Professionals’ Conference is on 19 September
Register your interest in attending on Professionals’ Conference in London (and online) on Friday 19 September 2025 by visiting RetinaUK.org.uk/prof-conf
“I really think you do an amazing job, one of the best Conferences I attend for people with specific sight loss,” Professionals’ Conference attendee.
“It was highlighted so clearly that people need accessible information and that everybody is included when it comes to getting an eye test and follow up appointments,” Professionals’ Conference attendee.
Website
Discover a wealth of information on inherited sight loss, available support and current research at RetinaUK.org.uk
Our website includes a section specifically for professionals with material, which can be downloaded, along with an order form for hard copy leaflets. We would be happy to send you a supply of these to hand out in your practice. Visit RetinaUK.org.uk/for-professionals
Newsletters
Sign up to receive the latest news from Retina UK, including our emails specifically for professionals. Choose which format is best for you.
Sign up to receive our information RetinaUK.org.uk/keep-in-touch, email info@RetinaUK.org.uk or call 01280 821334.
Visit RetinaUK.org.uk/resources to sign up for our newsletters.
Helpline
Our Helpline team are here to support you and your patients. They can answer your questions and signpost to other sources of information. Those affected by inherited sight loss can speak with our volunteers with lived experience.
Call 0300 111 4000 or email helpline@RetinaUK.org.uk
Discover Wellbeing
Our online course helps people affected by inherited sight loss to develop an awareness of emotional wellbeing and the practical skills to adapt to life’s ups and downs. It includes a CPD-accredited course called Supporting Others, designed specifically for professionals.
Visit Retinauk.org.uk/wellbeing
Unlock Genetics
Our Unlock Genetics resource provides clear, trustworthy and balanced information on genetics, inheritance patterns, accessing a genetic test and genetic counselling. It also provides information on how to make appropriate referrals for genetic counselling and testing.
Talks and presentations
Our staff and community members with lived experience are happy to share their knowledge and expertise. We regularly deliver presentations for groups of professionals online and in person. Interested? Email services@RetinaUK.org.uk
Charity supports research into inherited sight loss
Research
Retina UK has invested more than £17 million into cutting-edge research since we were founded in 1976. We are proud to support some of the best scientists and clinicians in the fields of ophthalmology and genetics and we are committed to driving forward high quality research into causes and treatments.
We are determined to build on the progress that has already been made, maintaining momentum and driving forward the best and most promising research into inherited retinal dystrophies and possible treatments. Our ability to do so depends entirely on the contributions we receive from our fantastic supporters.
Get involved
There are lots of ways you can support Retina UK. From hosting one of our collecting tins to entering a team for a challenge event, we’d love you to get involved. We also have event sponsorship and advertising opportunities available to corporate supporters.
To find out more, visit RetinaUK.org.uk/fundraising