Each week we are going to be saying “Hello” to another organisation in the VI world to learn more about who they are and what they do.
This week, we are chatting to Matthew Carr (Information and Support Manager) from Retina UK.
So, Hi Matthew, please can you tell us about Retina UK:
We were founded in 1976 by Lynda Cantor, who is one of our Trustees, as when she was diagnosed with Retinitis Pigmentosa (RP) she was frustrated at the lack of knowledge and support available. Together with Professor John Marshall, another Trustee, they have helped us grow from a small community group into a respected medical research charity.
Originally, we were the British Retinitis Pigmentosa Society; then we became RP Fighting Blindness; and now, after consultation with our community, we are Retina UK. This is because we support anybody affected by inherited retinal conditions and not just RP.
Over the past 45 years we have invested more than £16 million into cutting-edge research and are proud to support some of the best scientists and clinicians in the fields of ophthalmology and genetics. We are committed to driving forward high quality research into causes and treatments whilst providing information and support to help people to lead a fulfilling life.
What Information and Support (Services) do you provide?
There is lots of information on our website including specific sections for parents, teachers and employers. We also have a helpline that is staffed by volunteers with inherited retinal conditions – so they are able to provide empathy and real life solutions. They can be contacted via phone (0300 1114000) between 9.30am and 9.30pm Monday to Friday or anytime via email.
Additionally, we have a Talk and Support Service that pairs up anyone who may be feeling isolated or lonely with a trained volunteer for regular friendly phone calls.
We also have a number of Local Peer Support Groups based around the UK who hold regular meetings, virtually at the moment, and Facebook pages where hints and tips can be shared.
We hold Information Days as well – we have dates planned in the Autumn for Cardiff and London – and attend networking events such as Sight Village. We are also in regular contact with consultants and respond to referrals received.
And your Annual Conference is coming up?
Yes, our Annual Conference is taking place on Saturday 17th April. There are a number of guest speakers, focusing on the latest research and the importance of genetic testing plus diagnosis and counselling. There will be plenty of opportunities throughout the day to ask questions (via the online chat, email or phone).
We are also having a Professionals Conference on Friday 16th April with guest speakers from industry partners including pharmaceutical and technology companies.
How can we find out more information?
Please engage with us, and keep up to date with what is happening, via our social media channels: