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Retina UK

Retina UK•podcasters.spotify.com
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Retina UK supports people affected by inherited progressive sight loss and invests in medical research to ensure that people an lead a fulfilling life, now and in the future.
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Episodes

Unlock Genetics

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 coun...

Apr 21, 2021•39 min

Retina UK Professionals' Conference - April 2021

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...

Apr 21, 2021•3 hr 50 min

Retina UK Annual Conference - April 2021

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....

Apr 21, 2021•4 hr 7 min

Retina UK Annual Conference & AGM 2021 - Programme

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 .

Apr 15, 2021•20 min

E-Newsletter March 2021

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

Mar 29, 2021•9 min

Why you might consider getting a genetic test

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.

Mar 24, 2021•10 min

The practicalities of 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).

Mar 24, 2021•11 min

E-Newsletter January 2021

A PDF copy is available here: https://retinauk.org.uk/information-support/publications/

Jan 25, 2021•8 min

E-Newsletter December 2020

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

Dec 04, 2020•7 min

First NHS treatment for an inherited retinal dystrophy - Retina UK speaks to three recipients

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.

Nov 30, 2020•33 min

E-Newsletter October 2020

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

Oct 13, 2020•6 min

The new MyEyeSite application and how it will give people living with rare eye conditions ownership of their own digital medical data

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 dig...

Oct 06, 2020•35 min

E-Newsletter - September 2020

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

Sep 15, 2020•7 min

Look Forward - Summer 2019 - Issue 168

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.

Aug 13, 2019•45 min•Ep. 168

Findings from sight loss survey 2019

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 communit...

Jul 24, 2019•50 min

Look Forward - Spring 2019 - Issue 167

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/

Apr 16, 2019•51 min

RPFB Annual Conference 2018

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...

Jun 23, 2018•4 hr 40 min
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