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 This talk was originally made in the latter part of 2020 to the Retina UK Local Peer Support Groups.
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.
Latest Retina UK Podcast features Luxturna treatment
Retina UK Annual Conference
The Big Give Christmas Challenge
Charles Bonnet Syndrome Patient Information Event
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 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.
This E-Newsletter includes information about:
Our BBC Lifeline appeal
Virtual local group meetings
Royal Parks half marathon
Volunteers needed to test new app
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/
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
RP Question time & Conference Close
Annual General Meeting
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
24 June 2017
Exhibition, stands and registration open
Convene and Conference Welcome (5 mins)
Chairman, Don Grocott
Presentation one: Small Molecule Therapies (30 mins)
Professor Mike Cheetham
Presentation two: Changing the Final Destination – correcting the mistakes in our genetic make up to prevent disease progression (20 mins)
Professor Tara Moore
Tea and coffee break (40 mins) with a chance to view the stands and chat
Please reconvene promptly for the second session
Genetic Testing in RP – an update (30 minutes)
Professor Susie Downes
The John Marshall Award – RP Scientist of the Year presentation (15 mins)
Presented by Professor John Marshall MBE, RPFB
Chief Executive’s Conference Address (15 minutes)
Tina Houlihan, Chief Executive, RP Fighting Blindness
Lunch (55 mins) - Lunch is provided and the stands will remain open
Please reconvene promptly for the afternoon session
Inspirational speaker: Steve Bate MBE (30 mins)
Workshop Sessions (60 mins)
Genetic Management (Held in main room)
Retinal Implants (Held in room two)
Benefits (Held in room three)
RNIB Connect (Held in room four)
Employment (Held in room five)
Tea and Coffee Break (30 mins) with a chance to view the stands and chat
Please reconvene promptly for the final session
RP Question Time (60 mins)
Chaired by Professor John Marshall MBE and joined by this morning’s medical speakers
Chairman’s Conference Address (10 mins)
Don Grocott, Chairman of the Board
Annual General Meeting (35 mins)
The formal business matters of the charity
Non-members are welcome to attend but are unable to speak or vote on any resolution
Below are recordings and copies of the presentations from the RP Fighting Blindness (now Retina UK) Families Conference, held 5th to the 7th of May 2017.
Welcome & Introduction
Inherited Retinal Dystrophies and Syndromes – Prof Andrew Webster
What can an alliance of patients and professionals achieve – Prof Graeme Black
Medical Q & A
The current clinic experience for families – Rob Henderson
The Genetic Eye Clinic experience – Theo Gale
Life beyond diagnosis – Laura Ross
How families cope and provide the right support for their children – Bo Anderson
Q & A
Translating Science into Medicine – Dr Mariya Moosajee
Science Q & A
A Family Story – Chloe Joyner & Bhavini Makwana
Pathway to support for education – Wendy Sainsbury
The Appreciative Enquiry Session (part 1)
The Appreciative Enquiry Session (part 2)
The Appreciative Enquiry Session (part 3)
The Appreciative Enquiry Session (part 4)
The Appreciative Enquiry Session (part 5)
The Appreciative Enquiry Session (part 6)
Below are recordings and copies of the presentations from the RP Fighting Blindness Aberdeen Patient Information Day held on 15 September 2016.
Aberdeen Patient Information Day – Part 1
Aberdeen Patient Information Day – Part 2
Aberdeen Patient Information Day – Part 3
Aberdeen Patient Information Day – Part 4
Aberdeen Patient Information Day – Part 5