Explore every episode of the podcast Retina UK

If you would prefer to download a copy of the programme in PDF or Word (plain text), please visit: ⁠RetinaUK.org.uk/event/annual-conference/

If you would prefer to download a copy of the programme in PDF or Word (plain text), please visit: RetinaUK.org.uk/event/professionals-conference/

The latest e-Newsletter from Retain UK.

Please consider donating to Retina UK through a monthly 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 www.RetinaUK.org.uk/regular-giving to sign up, or, if you prefer, call us on 01280 821334.

A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.

Retina UK Impact Report illustrating the difference we made in 2020.

A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.

Gold medal winning paralympian and Retina UK Ambassador Steve Bate MBE talks to Head of Fundraising, Deborah Laing in the run up to the 2020 Paralympics in Tokyo. 

This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2021 (Issue 174). You can download a copy in PDF and Word format on the Retina UK website: www.RetinaUK.org.uk/publications.

This content has been taken from the Unlock Genetics website: www.RetinaUK.org.uk/genetics.

High quality information on genetic testing and counselling for families affected by inherited sight loss is now available in one place thanks to the launch of an innovative new website, Unlock Genetics (www.RetinaUK.org.uk/genetics). The site aims to increase the level of awareness of genetic testing and genetic counselling amongst people living with inherited sight loss conditions, empowering them to make fully informed decisions about their lives, healthcare and family planning. It provides clear, trustworthy and balanced information and has been developed with significant input from experts in the field and also those who live with inherited sight loss.

A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/.

Retina UK Research Development Manager gives a broad update on what's happening in the research world. This talk was originally made in the latter part of 2020 to the Retina UK Local Peer Support Groups.

A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/. 

Bhavini and Martin share their very different experiences of genetic testing and counselling with Kate, Retina UK’s Research Development Manager.

Join Research Development Manager, Kate Arkell as she speaks to our latest research grantees about their projects.

• PhD studentship: Dr Matteo Rizzi, UCL Institute of Ophthalmology
  Investigating photopsia and photophobia in Stargardt disease.
• PhD studentship: Chloe Brotherton, Edinburgh University
  Understanding why different RPGR gene mutations can lead to different diagnosis.
• PhD studentship: Gabriel Velichkova, UCL Institute of Ophthalmology
  Investigating Stargardt disease as a target for gene repair.
• Professor Jacqueline van der Spuy, UCL Institute of Ophthalmology
  The consequences of toxic accumulation of a molecule called cGMP in Leber congenital amaurosis (LCA).
• Professor Jane Sowden, UCL Great Ormond Street Institute of Child Health
  Restoring some vision at the later stages of sight loss in advanced retinitis pigmentosa (RP) using a stem cell patch.

“My genetic counselling was a very positive experience and one which I really recommend. It was undertaken in a specialist multidisciplinary genetic clinic and was combined with taking blood samples for genetic testing on the day.

“The counselling was informative, thorough and sensitively carried out and covered both myself and my wider family which confirmed the “type” of RP we have. With the huge advances in genetic understanding being made in the medical sector, I believe that counselling will play a significant role in furthering potential treatments.”

Bhavini talks about her experience of genetic testing and counselling

The different tracks within this episode feature Retina UK Research Development Manager Kate Arkell in conversation with Georgina Hall, Consultant Genetic Counsellor at the Manchester Centre for Genomic Studies about why you might consider getting a genetic test. It is followed by Retina UK Information and Support Manager Denise, who speaks to Georgina about the practicalities of getting a genetic test. Finally Bhavini and Martin share their very different experiences of genetic testing and counselling.

Find out more by visiting our website: www.RetinaUK.org.uk/genetics.

The Conference took place on Friday 16 April 2021. It was held online due to restrictions currently in place. The programme is available to download as follows:

• PDF format: https://retinauk.org.uk/wp-content/uploads/2021/04/Professionals-Conf-2021-FINAL-2.pdf
• Word format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-Professionals-Conference2021.docx

The Conference took place on Saturday 17 April 2021. It was held online due to restrictions currently in place. The programme is available to download as follows:

• Programme in PDF format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-annual-conf-prog_2021-FINAL-2.pdf
• Programme in Word format: https://retinauk.org.uk/wp-content/uploads/2021/04/Retina-UK-Annual-Conference2021.docx

The programme is also available in audio format on this channel.

Annual Conference - 17 April 2021, starting at 9.30am with the AGM, followed by the Conference at 10.00am.

More information is available on the Retina UK website at www.RetinaUK.org.uk/annual-conference.

A PDF copy of this recording is available at: https://retinauk.org.uk/information-support/publications/

Retina UK Research Development Manager Kate in conversation with Georgina Hall, Consultant Genetic Counsellor at the Manchester Centre for Genomic Studies about why you might consider getting a genetic test.

Retina UK Information and Support Manager Denise Rawden speaks to Georgina Hall, Consultant Genetic Counsellor at the Manchester Centre for Genomic Medicine. Whole genome sequencing is now routine for genetic testing for inherited retinal conditions (March 2022).

This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2021 (Issue 173)

The latest e-Newsletter from Retina UK. If you would prefer to receive this content by email, please subscribe via our website: Join our mailing list - Retina UK

A written article based on this recorded interview is available in the Spring 2021 edition of our Newsletter, Look Forward: https://retinauk.org.uk/information-support/publications/

• Latest Retina UK Podcast features Luxturna treatment
• Retina UK Annual Conference
• The Big Give Christmas Challenge
• Charles Bonnet Syndrome Patient Information Event
• Local groups
• Christmas Raffle
• Tech tip
• Sight Village news
• 10 for 10 Virtual Challenge

Retina UK Research Development Manager Kate Arkell speaks to three of the first people to receive the Luxturna (voretigene neparvovec) treatment in the UK. Jake, Lee and Matt all received the Luxturna gene therapy at the start of 2020. They all have two faulty copies of the RPE65 gene and are living with Leber congenital amaurosis type 2 (LCA2) and severe early-onset RP.

This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2020 (Issue 172)

This edition includes details about:

• The Retina UK Christmas raffle
• Usher Kids UK family Zoom calls
• Charles Bonnet syndrome patient information event
• The difference we made in 2019
• Virgin Money London Marathon 2021
• Volunteers needed to test new memory stick project

Retina UK Research Manager, Kate Arkell, speaks to Professor Andrew Webster, Professor of Molecular Ophthalmology at University College London and Consultant Ophthalmologist at Moorfields Eye Hospital; Dr Nikolas Pontikos, Computational Scientist, currently a Eye Moorfields Charity career development Fellow at University College London and Nick Nettleton, Founder and CEO at Loft Digital.

The MyEyeSite application aims to give people with living with rare eye conditions ownership of their own digital medical data.

https://myeyesite.health/ 

Thanks to you ...
The impact we made in 2019

This E-Newsletter includes information about:

• Our BBC Lifeline appeal
• Virtual local group meetings
• Research funding
• Royal Parks half marathon
• Volunteers needed to test new app
• Christmas raffle
• Audio material
• Feedback

This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2020 (Issue 171)

Join the fun and support a great cause.

Our Weekly Lottery has now arrived. This podcast aims to answer any questions you may have and encourage you to take part.

RetinaUK.org.uk/lottery

This is a voice recording of an article posted on the Retina UK website: https://retinauk.org.uk/general-news/retina-uk-covid-19-response/

This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2020 (Issue 170)

This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2019 (Issue 169)

Listen to the audio recordings from the Retina UK Annual Conference on 28 September 2019 in Milton Keynes.

Listen to the audio recordings from the Retina UK Professionals' Conference on Friday 27 September 2019 in Milton Keynes

The latest newsletter from Retina UK containing updates from all areas of the charity; the latest research news; our Annual Conference and other events; the information and support we provide and the difference this makes. None of this would be possible without your support and we also celebrate the many ways you get involved.

National sight loss charity Retina UK has published its unique insight into the experiences of those living inherited retinal conditions.

Almost 1,000 people completed a survey earlier this year to help the charity understand the real-life experiences, challenges and expectations of those living with these conditions.

Tina Houlihan, Chief Executive, said: “We are an organisation entirely focussed on people living with inherited retinal dystrophies; to make the biggest difference for our community and have the right priorities we need to constantly learn more about real-life experiences, challenges and expectations of families living with these conditions.”

Our printed Newsletter, Look Forward, is produced three times per year. It is available in print, on audio, in digital format and also in Braille. For more information and to subscribe to Look Forward, please visit:  https://retinauk.org.uk/ 

This is the audio edition of the Retina UK Newsletter, Look Forward - Winter 2018 (Issue 166)

This is the audio edition of the Retina UK Newsletter, Look Forward - Summer 2018 (Issue 165)

This webinar was broadcast live on Thursday 21 March 2024. It is available in video format on our YouTube channel: https://youtu.be/oF5DP6XUsXk

Have you ever been tempted to take part in the TCS London Marathon? In 2022 the TCS London Marathon raised £58.3 million for charity so it’s a vital source of income. Our Events and Community Fundraising Manager, James Clarke, talks to three of our 2024 runners about: - their motivation for taking part - their connection to Retina UK - the different ways in which they’ve been fundraising - what they are most looking forward to (or apprehensive about) for the big day.

Find out about our upcoming webinars on our website: ⁠RetinaUK.org.uk/webinars⁠.

Below are recordings from the RP Fighting Blindness (now Retina UK) Annual Conference held on 23 June 2018.

• Welcome & Intro
• Dr Stephen Hicks presentation
• Victoria Claire presentation
• Dr Laura Brady presentation
• Voice Control presentation
• Dr Mariya Moosajee presentation
• Prof Susie Downes presentation & Prof John Marshall Award
• OxSight Workshop
• RP Question time & Conference Close
• Annual General Meeting

This is the audio edition of the Retina UK Newsletter, Look Forward - Spring 2018 (Issue 164)

Below are recordings and copies of the presentations from the RP Fighting Blindness (now Retina UK) London Information Day held on 07 December 2017.

• London Information Day – Part 1
• London Information Day – Part 2
• London Information Day – Part 3