Take heart. The price will come down in time as this (or another treatment) becomes more common place. Am an RP patient who is losing his sight too

As far as i can see this procedure is not for patients who losing vision by glaucoma and have damaged optic nerve bcs i m one of them and there's no way right now to restore lost vision by glaucoma bcs there's no way to repair or regenerate optic nerve. You can only preserve the remaining vision but can't bring back what's gone

@@lemezohaib check out vegan doctor Brooke Goldner, MD. I believe she has a glaucoma patient who has better sight. I have RP . ...I'm trying to drink her green smoothies loaded with dark green leafy vegies.

@@AbbyCd I checked her videos but didn't get any idea what should I do and where to start. Can you put me in the right direction? More precisely to the glaucoma part

Look at Redlight therapy and microcurrent stimulation, online research has lots of info

Especially during the COVID 19 crisis

ONLY FUTURE SUMMER 2!! Lots of test subjects for gene therapy medicines.

This is real development ❤👏

I have had enough of commenting at this channel , there is no point because they just move your comments , it's all propaganda for coronavirus

Now let’s wait and see if any tumorigenesis occurs

@opener of the world The fuck you on mate?

@opener of the world are u on coke or just severely out of touch

no you don't

This is why your taking vaccines they want your dna so they can run the whole system of dna which is data and data through the technology your taking it's called genome sequencing and they will sell you the good side of things but not the bad and soon we will be paying for health care in the uk these kind of treatments wont be available for poor people go and ask your nhs for this today Cookies on the NHS England and NHS Improvement website We’ve put some small files called cookies on your device to make our site work. We’d also like to use analytics cookies. These send information about how our site is used to a service called Google Analytics. We use this information to improve our site. Let us know if this is OK. We’ll use a cookie to save your choice. You can read more about our cookies before you choose. 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Genomics NHS Genomic Medicine Service The National Genomic Test Directory Genomic Research Genomic Laboratory Hubs Genomics resources Home Genomics NHS Genomic Medicine Service NHS Genomic Medicine Service The role of NHS England and NHS Improvement is to enable the NHS to harness the power of genomic technology and science to improve the health of our population and deliver on the commitments in the NHS Long Term Plan: To be the first national health care system to offer whole genome sequencing as part of routine care. To sequence 500,000 whole genomes by 2023/24 and help transform healthcare for maximum patient benefit, including for all children with cancer or children who are seriously ill with a likely genetic disorder. Extended access to molecular diagnostics and offer genomic testing routinely to all people with cancer. Early detection and treatment of high-risk conditions including expanding genomic testing for Familial Hypocholesterolaemia. Linking and correlating genomic data to help provide new treatments, diagnostic approaches and help patients make informed decisions about their care. These commitments will be delivered on by the NHS Genomic Medicine Service for England which will provide: Consistent and equitable care to for the country’s 55 million people. Operate to common national standards, specifications and protocols. Deliver a single national testing directory covering use of all technologies from single genes to whole genome sequencing. Give all patients an opportunity to participate in research for their individual benefit but also to inform future care for other patients. Build a national genomic knowledge base to provide real world data to inform academic and industry research and development. The systematic application of genomic technologies has the potential to transform patient’s lives by: enabling a quicker diagnosis for patients with a rare disease, rather than years of uncertainty, often referred to in rare disease as the ‘diagnostic odyssey’. matching people to the most effective medications and interventions, reducing the likelihood of an adverse drug reaction. increasing the number of people surviving cancer each year because of more accurate and early diagnosis and more effective use of therapies. Workforce Development To help achieve this we are delivering three workforce development programmes covering nursing and midwifery, pharmacy and medical practitioners, with the support of Health Education England’s Genomics Education Programme. You can find out more about this programme and the genomic resources available on their website. 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Through its professional, patient and public representation, the Genomics CRG carries out the following functions: Advise on clinical policy and strategy for genomics, including implementation of NHS Long Term Plan commitments and future development of the NHS GMS; Oversee a clear and transparent process for annual review of the National Genomic Test Directory (supported by three test evaluation working groups covering rare and inherited disease, cancer and pharmacogenomics, see below); Support activities to raise awareness and embedding of genomics across all clinical specialties; and Advise on, review and develop guidance and service specifications (including the clinical genetics service specification) If you would like to be involved with the CRG and help shape policies and the approach taken by the NHS Genomic Medicine Service then you can sign-up and become a stakeholder. Working with communities and patient groups People and communities are at the heart of what we do, and there are many ways that members of the pubic and people with lived experience of genomics can get involved in our work, helping shape the development of services and improve patient experience. These including applying for a position on one of the groups and forums that set our strategy and policy, responding to consultations on changes to services, helping co-produce patient information or sharing your story through the media. Opportunities to get involved are advertised on the Involvement Hub and you can also contact the communications and engagement team in the Genomics Unit..

Matt Hancock announces new National Genomic Healthcare Strategy Health and Social Care Secretary Matt Hancock has today announced the launch of a landmark new strategy that will secure the UK’s place in the future as a global leader in genomics. The new National Genomic Healthcare Strategy, Genome UK: the future of healthcare, will ensure the UK can offer patients the best possible prognostic, preventative and personalised care by harnessing the potential of advanced genome sequencing. The strategy sets out how the UK genomics community, from researches through to the NHS, will work together to harness the latest advances in genetic and genomic science, research and technology for the benefit of patients, to create the most progressive genomic healthcare system in the world. This will drive improvements in healthcare for patients, reducing limitations between clinical care and research, and continue to deliver innovative new research projects in the UK. The strategy is hoped to unite the genomics community through a shared goal for the future of the system. The strategy focuses on 3 key areas: Diagnosis and personalised medicine - using genomic technologies to identify the genetic causes of rare diseases, infectious diseases, and cancer and provide personalised treatments to illness. The NHS will embed the latest genomic technologies to benefit patients. Prevention - genomics will be used to accurately predict the risk of chronic diseases. Subject to validation, national screening programmes could use genomics to identify at-risk populations, including more vulnerable populations and those in harder to reach groups to allow earlier clinical and lifestyle interventions. Research - we will enable more efficient and improved collaboration between researchers and clinicians to benefit patients, while upholding the highest standards on the use of data. This includes ensuring that research findings are translated into healthcare settings to benefit patients. Health and Social Care Secretary Matt Hancock said: “Genomics has the potential to transform the future of healthcare by offering patients the very best predictive, preventative and personalised care. “The UK is already recognised around the world as a global leader in genomics and this strategy will allow us to go further and faster to help patients right here in our NHS and give them the best possible chance against a range of diseases. “The UK is using its expertise in genomics right now to advance our understanding of Covid-19, develop new treatments and help us protect the most vulnerable.” Chris Wigley, CEO of Genomics England, said: “This is an important moment for genomic healthcare in Britain. With the launch of Genome UK, we are a step closer to a future where genomics can improve everyone’s health and wellbeing, based on the latest scientific discoveries. “Genomics England continues to focus our efforts on enabling genomic healthcare to help doctors diagnose, treat and prevent illnesses, and accelerating genomic research by providing the health data and advanced technology researchers need to make new discoveries and create more effective medicines. “The speed at which everyone has come together to work collaboratively on this study demonstrates how significant genomic sequencing is in population health today. We now have a team of the best scientific minds and tech experts all working together at tremendous pace, to analyse the genomic data we have gathered. This work will help us to understand why the virus affects people in different ways, which will potentially allow us to personalise treatment, discover new therapies, save lives - and even prevent future outbreaks.” Matt hancock does not have shares in the vaccine but he has shares in a genome sequencing company called genome uk

I have something similar. Stargardts disease but only slight peripheral vision loss. So far. Fear is not my main emotion. Of all the people I know only one has asked the question, 'don't you feel angry?' Yes I do!

Same here buddy. Suffering of RP. In my early 30s and I cant see shit in the dark. But vids like those give hope.

Püre fear, yes..not to be i dependant...xxx Best wishes n

What is this condition called ?

@evan antimisiaris Retinitis Pigmentosa, recently found out I have the RPGR X Linked form.

Rolling in the Gene Therapy stories to make gene editing vaccinations seem fantastic, the beeb is so predictable and pathetic, they always start off with good intention stories and end up creating a nightmare in society, do not trust this media outfit any more, every story is part of the agenda.

Hmmm...how about making people nice? Can we use gene therapy to get rid of hate, jealousy, selfishness, anger and racism?

😢😢

Please understand this treatment "Luxturna" is only for 1 of the over 300+ genetic causes of RP i,.e. Lebers Congenital Amaurosis Type 2 (LCA2). This form of RP makes up a very small percentage of all RP Pts. As an Ophthalmologist, why do you not already know this. Update your knowledge base f you wish to serve the visually deficiet community. This treatment has been commercially available for many years.

Every eye checkup I get done is the same result, being told it’ll get worst and that I’m not eligible for any income support in Alberta BECAUSE it’s not bad enough yet 😂😂😂😂😂😂😂😂😂😂😂 I live every day of my life suffering terribly and no one understanding how RP affects me, being told there is no cure and that they are getting closer and closer but it’ll just cost me a Fricken fortune to get some operation done, but it’s not even 100% it’ll cure you….sad sad stuff.

Why?

@ONLY FUTURE SUMMER 2!! why's that?

Unfortunately, many misuse those gifts and go drop bombs instead of being thankful do gooders. What a pity!

@ONLY FUTURE SUMMER 2!! Oh crawl back under your rock.

Big pie in the sky.

Yes!!

Are you also suffering rp bro?

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

אפשר לקבל תגובה בעברית

What's the name of the disease, I didn't hear it mentioned

Others. You mean women? lol

Please understand this treatment "Luxturna" is only for 1 of the over 300+ genetic causes of RP i,.e. Lebers Congenital Amaurosis Type 2 (LCA2). This form of RP makes up a very small percentage of all RP Pts.

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

dominant optic atrophy

If only cretins like you were transformed into optimists with gene therapy...

Nothing will happen if once you retina detachment surgery is successful

There’s already procedures for that. I know. Detached my retina / macula. 2 years ago. 6 surgeries later & a cataract operation. I can see, it’s not what it was, but I’m grateful for what I can see. This procedure, could make a massive difference to people with genetic abnormalities that damage their sight. Maybe one day it will be able to help people like you.

Please understand this treatment "Luxturna" is only for 1 of the over 300+ genetic causes of RP i,.e. Lebers Congenital Amaurosis Type 2 (LCA2). This form of RP makes up a very small percentage of all RP Pts.

Did the treatment work?

Tbh, Elon musks neuralink sounds like a better alternative. Since it’s a nerve issue and not a genetic condition

Hi how to reach nuralink bcz nu husband has same problem

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

Phycological preparation for their agenda, you can see where this is leading?

@ONLY FUTURE SUMMER 2!! The vaccinated masses will soon be welcoming manipulation of their genes, they believe anything the media tells them.

I am looking any kind of research on LCA type8 CRB1 Genes is there any genes therapy?

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine, Luxturna, contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

Heey thank for this revision review 😃😃😃😃😃

😃 thanks visit again

@@alwaysforyou9302 finally I found what i was looking for🎇🎇

@@alwaysforyou9302 how to buy this please help

@@alwaysforyou9302 good research TQ

The R & D costs must be astronomical

Rolling in the Gene Therapy stories to make gene editing vaccinations seem fantastic, the beeb is so predictable and pathetic, they always start off with good intention stories and end up creating a nightmare in society, do not trust this media outfit any more, every story is part of the agenda.

Yes, because it's really just the injection that the patients pay for. Years of development, testing and production don't cost anything at all. I mean there probably aren't too many saints in the pharmaceutical industry, but you sure dumb it down a little to much by calling this just an injection.

@@suzesiviter6083 Have you ever heard of pareidolia?

@@JesseWetherell Yes, have you ever heard of the phrase "Once a liar always a liar" or "A leopard never changes its spots"?

Probably not because the treatment involves replacing a specific gene with a healthy version of the gene. However the method used in the Luxturna treatment could possibly be used with different genes in the future.

Yes+

That’s bits of your retina that have come loose floating in your vitreous fluid.

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

My mother had also same problem where to get it

Please understand this treatment "Luxturna" is only for 1 of the over 300+ genetic causes of RP i,.e. Lebers Congenital Amaurosis Type 2 (LCA2). This form of RP makes up a very small percentage of all RP Pts.

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

Hi `King. I also have the RP condition and also in the Philippines. I'm trying to get details as to the contact info of the doctors doing the gene therapy. Baka naman mas mura na ngayon.

@stemc86 what condition do you have? I have optic disc pit maculopathy 😢

@@Michelle-et6ru x linked retinisxjisis

hey, I'm currently researching rod-cone dystrophy. if you are okay with telling me what it's like for you with this disease, could you reach out to me?

Hi, How can I reach you? Thanks

Unless you have Leber's Congenital Amaurosis Type 2, this treatment will not work for you. LCA2 patients make up a very small percentage of the more than 300+ genetic causes of RP. This medicine contains a gene segment to replace the non-functioning RPE65 gene. The BBC has once again done a mis-service to the Blind Community, creating "click bait" implying this is a major break through to "cure RP" IT as been on the Market for several years and it only treats LCA2 but does not cure it!!!!

Same condition

@@mhrasel2671 Hi. Is it ok for me to ask you, how much eye sight you have remaining, and have you found any help. I only ask because maybe some chance we could help one another find help for this life-changing disease.... Please let me know when you have a moment thank you.