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Retina UK
United Kingdom
Приєднався 6 чер 2016
Retina UK was founded in 1976 by a group of people concerned at the lack of knowledge about inherited sight loss in the medical profession, the lack of a treatments, and the lack of support for people affected. Retina UK has since evolved into a respected medical research charity and a nationwide organisation providing support and information.
National Peer Support Group Winter Meeting - 16th January 2025
Welcome to our National Peer Support Group Winter meeting recording where we were pleased to welcome our guest speaker Andrew Palmer, Founder of V.I Safety.
Переглядів: 20
Відео
Webinar: Ask the expert with Dr Roly Megaw
Переглядів 114Місяць тому
Joining us for an "Ask the Expert" session is Dr Roly Megaw who is currently supervising a Retina UK/Macular Society PHD studentship and has received other Retina UK Research funding in the past. Dr. Megaw, answers your burning questions on inherited retinal conditions, the latest research, and much more. Whether you're living with a retinal condition or supporting someone who is, this webinar ...
'Talking' Travel Peer Support Group Meeting - 10th December 2024
Переглядів 21Місяць тому
Richard & Rachael were joined by our guest speaker, Anthony Gough, Trustee at North Wales Accessible Holidays for Blind and Visually Impaired.
Webinar: The Big Give: How your donations make a difference
Переглядів 472 місяці тому
Hear our innovative research grantees discuss their projects and the exciting progress they are making, and see how your gift can make a real impact this Big Give. Our panel includes Professor Majlinda Lako: Professor Majlinda Lako is the co-director of regenerative medicine stem cells and transplantation at Newcastle University. Professor Lako is a member of the Biosciences Institute and her w...
'Talking' Tech Peer Support Group Meeting - 7th November 2024
Переглядів 582 місяці тому
Join us for a tech round up following on from our visit to the London Sight Village event.
Webinar: Creating without limits: artistic expression and sight Loss
Переглядів 1073 місяці тому
This webinar is designed for anyone with an interest in the arts, whether you’re an artist yourself or someone who appreciates creative expression. It includes a panel of 4 artists who discuss their process of how they create their art, even showing us some of their creations! Attendees will gain unique perspectives on how visual impairments can influence and enrich artistic practices, turning ...
National Peer Support Group Autumn Meeting - 25th September 2024
Переглядів 643 місяці тому
To celebrate National Cooking Day we were delighted to welcome our guest speaker Gwyneth Boyes, the Blind Baker who talked about her inspirational story that led to a passion for cooking and baking even though she is living with RP and is severely sight impaired.
Research Q&A - Retina UK Annual Conference 2024
Переглядів 1303 місяці тому
Professor Graeme Black, Dr Panagiotis Sergouniotis, Chloe Brotherton, Gabriel Velichkova and Kate Arkell (Retina UK)
Progress at the forefront of Inherited Sight Loss research - Annual Conference 2024
Переглядів 1193 місяці тому
Progress at the forefront of Inherited Sight Loss research
Supporting the next generation of research leaders: a discussion with Retina UK-funded PhD students
Переглядів 613 місяці тому
Retina UK Annual Conference 2024 Our three new PhD student grantees, funded by donations, will share their findings. Chloe Brotherton, Hassina Zeriri, Gabriel Velichkova, Kate Arkell (Retina UK)
Harnessing the power of peer-to-peer support - Retina UK Annual Conference 2024
Переглядів 563 місяці тому
Our panel of lived experience volunteers and service users explain the positive impact peer-to-peer support has had on their lives. Paula McGrath (Retina UK) leads a panel session
The Eye Care Support Pathway and what it means for you - Retina UK Annual Conference 2024
Переглядів 1253 місяці тому
How this new guide and Retina UK can help you to access information, support and advice to help you live your best life. Helen Doyle (RNIB), Denise Rawden (Retina UK), Bhavini Makwana (BAME Vision)
Supporting you to deliver equitable, accessible and inclusive services Professionals' Conference 24
Переглядів 423 місяці тому
Practical advice on how you can offer inclusive services for people with inherited sight loss. Stephen Kill, Rebecca Lunness & Joanne Kennedy (SeeAbility), Terri Balon (RNIB), Bhavini Makwana (BAME Vision)
The importance of quality-of-life research: understanding the impact of inherited sight loss
Переглядів 953 місяці тому
Retina UK Professionals' Conference 2024 Exploring the outcomes of an in- depth study on the impact of retinitis pigmentosa (RP) on patients and family members. Matias Segovia (Oxford Eye Hospital), Kate Arkell (Retina UK)
The role of peer-to-peer support in achieving good outcomes for clients Professionals' Conference 24
Переглядів 553 місяці тому
Our panel of lived experience volunteers and service users explain the positive impact peer-to-peer support has had on their lives. Paula McGrath (Retina UK) leads a panel session
Working together to deliver the Eye Care Support Pathway - Retina UK Professionals' Conference 2024
Переглядів 1193 місяці тому
Working together to deliver the Eye Care Support Pathway - Retina UK Professionals' Conference 2024
'Talking' Travel Peer Support Group Meeting - 25th July 2024
Переглядів 444 місяці тому
'Talking' Travel Peer Support Group Meeting - 25th July 2024
'Talking' Tech Peer Support Group Meeting - 29th August 2024
Переглядів 394 місяці тому
'Talking' Tech Peer Support Group Meeting - 29th August 2024
Webinar: Bright Futures: Empowering young adults with inherited sight loss
Переглядів 3726 місяців тому
Webinar: Bright Futures: Empowering young adults with inherited sight loss
National Peer Support Group Summer Meeting - 3rd July 2024
Переглядів 326 місяців тому
National Peer Support Group Summer Meeting - 3rd July 2024
'Talking' Tech Peer Support Group Meeting - 11 June 2024
Переглядів 457 місяців тому
'Talking' Tech Peer Support Group Meeting - 11 June 2024
Webinar: Walking into Wellness: Uniting Movement and Mental Health this May!
Переглядів 587 місяців тому
Webinar: Walking into Wellness: Uniting Movement and Mental Health this May!
'Talking' Travel Peer Support Group Meeting - 16 April 2024
Переглядів 779 місяців тому
'Talking' Travel Peer Support Group Meeting - 16 April 2024
Webinar In Conversation with our Research Grantees
Переглядів 1839 місяців тому
Webinar In Conversation with our Research Grantees
Webinar: Fitness, blisters and fundraising ... being part of #TeamRetinaUK TCS London Marathon 2024
Переглядів 2610 місяців тому
Webinar: Fitness, blisters and fundraising ... being part of #TeamRetinaUK TCS London Marathon 2024
Talking Tech Peer Support Group Meeting - 14 March 2024
Переглядів 4010 місяців тому
Talking Tech Peer Support Group Meeting - 14 March 2024
'Talking' Travel Peer Support Group Meeting - 15 February 2024
Переглядів 5710 місяців тому
'Talking' Travel Peer Support Group Meeting - 15 February 2024
Webinar: A family’s experience of clinical trial participation
Переглядів 30511 місяців тому
Webinar: A family’s experience of clinical trial participation
Talking Tech Peer Support Group Meeting - 23rd January 2024
Переглядів 10711 місяців тому
Talking Tech Peer Support Group Meeting - 23rd January 2024
Hi. Can you give us an update on the MeiraGTx/Janssen gene therapy for XLRP? When will the company be seeking FDA approval?
Congratulation from Patients Association CRB1 Europe!
🌟 Hey Retina 🌟 I just wanted to take a moment to let you know how much your videos brighten up my day! 😊 Your positivity and creativity are truly inspiring, and I always look forward to seeing what you'll share next. Keep doing what you love because it’s making a real difference. You've got a fan for life here! 💛 Wishing you all the happiness and success in the world! 🌈✨
Your energy is unmatched! Keep spreading joy.
Your videos always make my day brighter! Keep it up! 😊
What about autoimmune immune retinopathy? It's so sad that all the focus goes to AMD.
Can RP treated by gene therapy ??
Thank you for sharing this video
Almost all of these retina stem cell therapy topics refer to AMD. I suffered from a retinal artery occlusion on my left eye 2 years ago. Last year I underwent an eye surgery to reduce the eye-pressure to an acceptable level (now about 26). On my left eye I see nothing but a slightly transparent grey cloud (due to dead retina cells), so my left eye is more or less blind as a bat. All the experts that have dealt with it (ophtalmology experts at the hospital, my own ophtalmologist), told/tell me that "prospects are very bad" and none of them ever mentioned a word about progress in stem cell research concerning the retina. So whenever I get notice of the latest results in retinal stem cell therapy (concerning AMD) I ask myself if these hopeful results apply to my case as well? Do they?
We lack expertise in retinal artery occlusion as our scope does not extend beyond inherited retinal degeneration, so unfortunately we may not be best-placed to provide information on this. Stem cell-based treatments that aim to restore vision in any condition are only in the early stages of development, and it will be several years before they are generally available, so this might be why your own doctors don’t mention them. However, there might also be issues specific to arterial occlusion that make stem cell-type treatments challenging - at Retina UK we don’t know enough about this, and I would suggest specifically asking your ophthalmologist about it.
@@RetinaUK "Several years"? I lack humour! So I guess I better go to Lourdes and take some sips of miraculous water. ua-cam.com/video/TMeVkz2ALU8/v-deo.htmlsi=HNMEA-SuwlXLTexs Timestamp 1 : 18 : 22
@@RetinaUK "Several years"? I lack humour! So I guess I better go to Lourdes and take some sips of miraculous water. ua-cam.com/video/TMeVkz2ALU8/v-deo.htmlsi=HNMEA-SuwlXLTexs Timestamp 1 : 18 : 18
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Maam gene therapy when available in market treat rp problems
I have eys gene and RP my peripheral vision is affected
Hi. Thanks for your comment. Our website has lots of information to support those living with RP. We also have a helpline that is open Monday-Friday 9:30am to 9:30pm where you can ask condition specific questions and seek information. Please find the link here: retinauk.org.uk/information-and-support/helpline/
I experience day blindness. For most of the day, and in most lighting I have almost no vision in my right eye, and my left eye is progressively getting worse and worse as well. I need help. My doctors i have seen don't know what to do. Apparently my retinas are atrophying but they can't find a reason why. Will stem cell therapies be available to humans in the near future? I am in school for nursing. I dropped out of college in 2017, and studied massage therapy to get something under my belt that I will be able to do if I go totally blind, I'm 26 now and I've continued to lose more, but I at least still have enough to get around. I finally mustered up the courage and readiness to go back to school, since I can still see... I figured if I go the rest of my life with this much I will be able to work and provide for my family and take care of a family properly... but I'm losing more and getting scared about what this means. I have no help at this point, but I need it bad. Is there at least any hope for me? How do i get involved in participating in this research. I am willing to participate. Any help at all is appreciated. Please contact me. (p.s. in very dim lighting my visual field expands, but what is restored is patchy)
My name is Percy. I am 26, I live in the United States. My visual field is going black.
Sir I am Asad khan and I am from Pakistan sir I want to ask about rp treatment .I also patient of retnitst pigmentos my eye side vision glasses number is mines 7,5 of both side sir can you explain me about its treatment and how much cost
Sorry for the delay in responding. We are a charity which funds research into the causes of (and treatment for) inherited retinal dystrophies. We also provide information and support. However, we do not offer treatments. There is currently only one treatment available for a specific genetic cause of a condition called Leber's congenital amaurosis. To be eligible, you have to have two faulty copies of the RPE65 gene. I'm sorry that's not more positive but if you sign up for our Newsletter, you'll receive updates on research on a regular basis. Go to
Our website RetinaUK.org.uk/get-involved/mailing-list.
I’d like some info - is this something that can recover older knees to function a bit better? (I’m 48 yrs old) I’ve been hectically into martial arts for most of my life and I think my knees and hips have taken their toll. I’ve heard good things about stem cell injections and I know they’re expensive. But would that help me in recovery of my worn down joints?
I'm sorry but we can't answer that. The medical professionals speaking at our conference are focused on ophthalmic benefits. I would recommend that you speak to your GP or Consultant before embarking on any kind of treatment.
@@RetinaUK many thanks. 🙂
thank you
SOMEONE VERY DEAR TO ME HAS RP AND DEAFNESS.. SHE AND I WISH SO VERY MUCH TO FIND A CURE
All types of rp problem when gene therapy available and in which year come in market❤😂😂
Nikolas is the man!
thanks @thalesacguimaraes :)
Nice
Beautiful poems thank you so much. 💫
Real stem cell therapy for retina is to help endogenous retinal stem cells, i.e. Muller glia cells, to clear away so-called inhibitory molecules so that its regenerative potentials can be triggered for regeneration. ua-cam.com/video/tdjr5z3uIb8/v-deo.html All glory belongs to God !
I certainly would like to be involved in research or trials if suitable. It's something I've said to my doctors for over 20 years but never hear anything, not like I can get an appointment with my doctors at the eye hospital these days
Feel free to join our Lived Experience Panel. We contact panel members about surveys, research and focus groups: retinauk.org.uk/get-involved/lived-experience/.
Thank you for posting
I am from Pakistan can I do gene therapy I am thalasimia Major ? What is price for gene therapy ?
I'm sorry but we do not provide any treatments. We are a charity which funds research here in the UK and provides information and support for people living with inherited retinal dystrophies.
Hi, my wife has RP. I have watched her lose her vision over the course of 8 years now. Is there any hope of finding a cure?
Is there any research about cone rod distrophy syndrome treatment using artificial intelligence?
You can find details of all current research in our Newsletters and on our website. retinauk.org.uk/resource/look-forward-summer-2023-issue-180/
Absolute masterclass work and breakdown .. this is impressive and hoping to see this available sooner then later.✌️
Is there any possibility to treat cone-rod syndrome with stem cells?
The technology described by Prof Armstrong in this talk could potentially also be applied to cone-rod dystrophy. However, it will take a while before the treatment is at a point where it could be tested in people, for any type of retinal condition.
@@RetinaUK thank you so much.
@@RetinaUK Hi. Sorry to butt into the conversation. I’ve just written a question in the comments section. A Would you be able to shed some light on my question. Thank you so much 😉
no sound
So some gene therapy for preserve and prevent further vision loss and optogenetic to restore vision match together
namaskar When will be treatment for Retinitis Pigmentosa from Bionic eye ? please give me informations i am from nepal
Stem cell when available in market and in which year come treat RP diease
The technology described by Prof Armstrong in this talk could potentially also be applied to cone-rod dystrophy. However, it will take a while before the treatment is at a point where it could be tested in people, for any type of retinal condition.
Keep making great videos. Become a YT god > 🄿🅁🄾🄼🄾🅂🄼 !
Incredible life story Jack!
He and Bleu Landau are so similar
What a handsome compere!
👌 ρгό𝔪σŞm
R u helping treating RP?
I love it Mark. Well done. You might be able to convince me to do one! I did chuckle that at first I could only see the middle part of your Retina UK t shirt, so I thought your name was Tina :-)
Thankyou for a very interesting webinar. Very enlightening, and a interesting topic . Will share with my opthalmic unit .
Please do. So pleased it was useful.
Would going for gene therapy help in regain excellent vision of 20/20?
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