I’m using text to speech to say this. I am almost completely blind from optic nerve drusen. I’m 19 can’t drive. Can barely work. I am considered poor. I didn’t have a childhood because I spent it in fear of losing my vision. I find out there is something that can possibly help and you charge $800,000 USD for the injection. I was so happy to see this then broke down crying after hearing the price for 1 singular injection. This isn’t a world I wanna live in. Knowing I can never afford it means this will be permanent.
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
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. Change my preferences I'm OK with analytics cookies Home News Publications Statistics Blogs Events Contact us  Search Search About us Our work Commissioning Get involved Insights Platform Our advice for clinicians on the coronavirus is here. If you are a member of the public looking for information and advice about coronavirus (COVID-19), including information about the COVID-19 vaccine, go to the NHS website. You can also find guidance and support on the GOV.UK website. 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. Genomics Clinical Reference Group The Genomics Clinical Reference Group (CRG) has been convened to support implementation of the NHS Genomic Medicine Service (GMS). 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 this condition. Currently, I have excellent vision. I just can't see in the dark. But I can't begin to explain the level of pure fear I feel knowing it's probably gonna get worse.
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!
Not only this should be used for eyes but also ears, noses, tongues, hands, feet, fingers, toes, arms, legs, shoulders, calves, mouths, tonsils, windpipes, lungs, hearts, livers, brains, spines and other bodily parts and facial partings
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.
It is disheartening as an ophthalmologist to tell patients with retinitiz pigmentosa (disease in discussion here) that nothing can be done and that the vision will keep falling. I hope it gets available at lower prices around the world.
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.
My eye condition keratoconus is the same, it really does suck, it's got to the point I'm partially sighted now even with glasses, it affects my every day life
What rare eye condition is this? Why isn't it mentioned in the article? Is it retinitis pigmentosa? This seems like really important information that should be provided.
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!!!!
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!!!!
I have a condition with retinal detachment. Can these symptoms be treated as well?? I too live with constant worries of possible sight loss. Hope scientific discovery will lead to healthier life for all of us….
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.
I have AMD for 5yrs now and I keep it at bay doing Eye Exercises and Nutrients. If I stop within two days my sight is in decline. The exercises are my daily routine.
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.
My wife has tunnel vision; retinitis pigmentosa. She sees very well,reads well but her peripheral vision is terrible. She occasionally trips over little obstacles. Can she be helped with this new discovery?
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!!!!
My father lost his vision slowly at the age of 25 due to nerves weakness. My father consulted doctor 20 years back and got to know there is no treatment !! But my father is 55 years old now, our family still in hope some day father would get his vision back!! Does gene therapy helps this case ?
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!!!!
I have the Retinitis Pigmentosa condition. I will appreciate if you can provide contact information of the Doctor and/or the Hospital that handles the gene therapy. Thank you.
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!!!!
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!!!!
I wonder if Matthew Wood getting his vision back will impact at all on his marriage... Seems like an interesting social experiment could be conducted along side these early treatment cases
Not one time did they say retinitis pigmentosa. I have it so i knew what they were talking about. I'd sure like to have the procedure done, bit at 60 years old im probably not an acceptable candidate..
I have optic nerve problem in left eye after head injury I can't see anything in left eye currently I am undergoing treatment in Sankara Netralaya Hospital Chennai Doctor said I have vision in left eye There is no possibility of return. Please let me know if there is any modern treatment for optic nerve or optic nerve recovery.
@@owenrussell5162 Nice to hear about good medicine service in the UK. But I am from Russia and free medicine is a very low quality here so that we can only dream of such therapy.
@@owenrussell5162 hi we are looking for retina treatment for my husband he s having night blindness and low vision also can you please help in this case
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?
I had an eye doctor drag a tool across the back of my retina during an eye surgery. It made a 3 to 4 mm straight scratch on my retina causing me to lose vision from mid eye to far upper left. I am looking for new tech to see if this can be repaired. Anyone know if this can be applied?
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!!!!
I have a rare eye condition called choroideremia. Because of this life changing disease,I am completely blind in my right eye and what sight I have remaining in my left eye is like looking through a straw. Is there any help for myself and others in my situation ?
@@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.
At 75 years of age I feel it very unlikely that I will be around to profit from these advances. A definite loss for advertisers who exploit vision to sell their products 😅
How can I get involved in a clinical trial for gene therapy because I have night blindness television I have retinitis pigmentosa so how can I get involved unless I live in Florida USA so how can I get involved in this gene therapy that will help restore my eyesight better
It’s all great but who can afford that, you would think the company would give it to the medical world for the good of mankind but it seems money is more important
Not really. It factors in research and also, with more time that passes, the price will go down. Take genetic engineering for e.g, before it was extremely expensive, now, it has dropped significantly.
@@kylecastillo3021 does it, well I’m actually effected by this and losing my eyesight and having a £600.000 bill to fix it is immoral. Since when did it become the norm for people to decide to leave others in medical distress for profit and I only have to mention the people who invented antibiotics as an example of what good that has done to the world. I’d prefer Being remembered as the person who cured many peoples blindness all around the world instead of a money grabbing company who became billionaires from it instead 🤦♂️
@@onlygazza I feel you. I really do. I too have medical issues that I wish I could treat with a top of the line treatment, but the main reason why it isnt cheap is because the government doesnt see it as a priorety. A private and exclusive hospital will always charge more for things like these because of the fact that they had to use external sources to get their treatment. If it was a government funded research and program, it would be way cheaper. Other factors play such as some governments allow companies to set whatever price they want. My point is. Im not saying your lying or you dont know what you're talking about. My point is that not always do lastest medical treatment will be expensive because people want it to be expensive and set it that price.
@@kylecastillo3021 I actually went to moorfields hospital around a decade ago for a consultation and I just think that the people inventing this treatment would be remembered more for sharing the technology for the benefits of man and womankind than becoming super rich !
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.
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!!!!
This is a very protein specific gene editing process, absolutely nothing to do with eyeball shape or lens irregularities. It is for one of the 400 types of Inherited Retinal Diseases where there is miscoding of the many hundreds of genes that carry the recipe for visual proteins. The particular IRD is called Leber Amaurosis Type II. Start affecting babies and patients are usually legally blind by age 20 yrs. About 50% of those treated in time will receive some improvement. But, it does not restore those eye cells that have already died off.
Hi everyone iam a Doctor but i got to know that i have rp at the age of 25 i was shocked to hear this and make my life terrible and this my earning period it becoming worst to live this life and nobody understand my condition and my dream of becoming doctor shattered. Iam in working age its very hard. I hope there must cure for this condition
I’m using text to speech to say this. I am almost completely blind from optic nerve drusen. I’m 19 can’t drive. Can barely work. I am considered poor. I didn’t have a childhood because I spent it in fear of losing my vision. I find out there is something that can possibly help and you charge $800,000 USD for the injection. I was so happy to see this then broke down crying after hearing the price for 1 singular injection. This isn’t a world I wanna live in. Knowing I can never afford it means this will be permanent.
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
This is incredible. I love science!
@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
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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.
Genomics Clinical Reference Group
The Genomics Clinical Reference Group (CRG) has been convened to support implementation of the NHS Genomic Medicine Service (GMS). 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 this condition. Currently, I have excellent vision. I just can't see in the dark. But I can't begin to explain the level of pure fear I feel knowing it's probably gonna get worse.
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.
The last 10 years have been so crucial in the development of AAV gene therapy. So happy for the approval.
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
Great news for all humankind. May God bless them sharp vision and health life ahead..👍
Not only this should be used for eyes but also ears, noses, tongues, hands, feet, fingers, toes, arms, legs, shoulders, calves, mouths, tonsils, windpipes, lungs, hearts, livers, brains, spines and other bodily parts and facial partings
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.
excellent! Truly amazing stuff
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.
It is disheartening as an ophthalmologist to tell patients with retinitiz pigmentosa (disease in discussion here) that nothing can be done and that the vision will keep falling. I hope it gets available at lower prices around the world.
😢😢
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.
My eye condition keratoconus is the same, it really does suck, it's got to the point I'm partially sighted now even with glasses, it affects my every day life
What rare eye condition is this? Why isn't it mentioned in the article? Is it retinitis pigmentosa? This seems like really important information that should be provided.
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
Did he just say it costs 600k pounds? OMG.
Please God do some miracle in this direction to recover from blindness. U have made this beautiful world which is not worthy for blind
'God' can't get me new eyes or anyone with sight problems.
I pray the price becomes affordable for people, i need it badly
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!!!!
Wtf. Why do they intentionally not say what the condition is or what exactly the treatment is or how they can get it? Worthless journalism.
£600,000 that’s one expensive operation.
Thank you 🙏
Im always for you😃
Welcome again
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
This is fantastic work
אפשר לקבל תגובה בעברית
Fantastic news!!!
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.
Nobel prize for them...
Yes!!
Me too I'm just 28 when my central vision lost it so hard to live with this disease and more harder because I can't afford that medication
What's the name of the disease, I didn't hear it mentioned
I have a condition with retinal detachment. Can these symptoms be treated as well?? I too live with constant worries of possible sight loss. Hope scientific discovery will lead to healthier life for all of us….
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.
Finally we are getting to hear something nice👍!
Hmmm...how about making people nice? Can we use gene therapy to get rid of hate, jealousy, selfishness, anger and racism?
Any hope for glaucoma patients? How to recover vision lost by damaged optic nerve
My doctor wanted to do this but my medical insurance won’t pay for it so I could not get it done
Wow!!! this is absolute madness! Amazing!
I have AMD for 5yrs now and I keep it at bay doing Eye Exercises and Nutrients. If I stop within two days my sight is in decline. The exercises are my daily routine.
Please BBC i request you to make a new latest video with fresh information. Please
600000 for an injection
Wow taking advantage of people's miseries
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"?
My wife has tunnel vision; retinitis pigmentosa. She sees very well,reads well but her peripheral vision is terrible. She occasionally trips over little obstacles. Can she be helped with this new discovery?
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!!!!
Is avaolable in india? and cost?
My father lost his vision slowly at the age of 25 due to nerves weakness. My father consulted doctor 20 years back and got to know there is no treatment !!
But my father is 55 years old now, our family still in hope some day father would get his vision back!!
Does gene therapy helps this case ?
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!!!!
I have the Retinitis Pigmentosa condition. I will appreciate if you can provide contact information of the Doctor and/or the Hospital that handles the gene therapy. Thank you.
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!!!!
That's so fantastic, well done.
Absolutely amazing. These men and others are so resilient! Great job medical technology!!
Others. You mean women? lol
I am facing this type of issues, here doctors are saying that it is a rare genetic problem and don't have any treatments for it
Excellent information great service for needy,
Excellent news!
Congratulations Mr. Bainbridge.
Hopefully i will get healed
Will it work for glaucoma also?
How can I learn more?
What is the name of the condition? It wasnt mentioned in the video
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!!!!
I wonder if Matthew Wood getting his vision back will impact at all on his marriage...
Seems like an interesting social experiment could be conducted along side these early treatment cases
I am happy to hear this news and hope it will be affordable for we nepali people also
Is Gene therapy available in india
How much?
I’m super happy to hear that there’s hope!
Hope they find cure all all type of blindness and other diseases which have no cure till now
Go Jake go! Good luck to all with this new development!
I have RP. My family and I went to Russia in the 80's for treatment. I do pray there will be a cure soon. 🙏🙏🙏
Did the treatment work?
Not one time did they say retinitis pigmentosa. I have it so i knew what they were talking about. I'd sure like to have the procedure done, bit at 60 years old im probably not an acceptable candidate..
Any updates in June 2024 ?
Anyone?
I have optic nerve problem in left eye after head injury I can't see anything in left eye currently I am undergoing treatment in Sankara Netralaya Hospital Chennai Doctor said I have vision in left eye There is no possibility of return. Please let me know if there is any modern treatment for optic nerve or optic nerve recovery.
Is your same type of research are going on for ABCA4 gene? Is there any hopes for it?
I am looking any kind of research on LCA type8 CRB1 Genes is there any genes therapy?
i have this disease and this is such good news , my night vision is by far the worse...im so happy to hear this news!! x
jel se sta zna jel ima uspjeh ova terapija? hvala
Astigmatism next please!
Yes+
Too costly
Ritinitus pigmentosa should also get
Affordable treatment
I remember the guy's wife at the end, she used to be in 80s female group Shakespear's Sister. It's the same haircut anyway.
When will this be available for people with x linked retinoschisis in the UK?
@stemc86 what condition do you have? I have optic disc pit maculopathy 😢
@@Michelle-et6ru x linked retinisxjisis
will this make way for other cures for diseases and even eye trauma and injuries ?
Good news, but many people can't afford it.
We have free heath care mate
the nhs paid for it
@@owenrussell5162 Nice to hear about good medicine service in the UK. But I am from Russia and free medicine is a very low quality here so that we can only dream of such therapy.
@@owenrussell5162 hi we are looking for retina treatment for my husband he s having night blindness and low vision also can you please help in this case
Warning, major jump scare @ 2:50
never see such shitty jumpscare since roblox piggy
Will it be usefull for eye floaters?
That’s bits of your retina that have come loose floating in your vitreous fluid.
Please help us . When someone knows that he will be blind in future its so painful and hard
I am suffering from rod-cone dystrophy, please tell me is there any way to treat
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
Such awesome news❤️ i love science
I had an eye doctor drag a tool across the back of my retina during an eye surgery. It made a 3 to 4 mm straight scratch on my retina causing me to lose vision from mid eye to far upper left. I am looking for new tech to see if this can be repaired. Anyone know if this can be applied?
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!!!!
did that dude just say the treatment costs 600k pounds? Dang, that is $836k usd!
Insane!!
What is wrong with the world?
Which country
£600k? I'd pick vision over a countryside cottage.
Does it help restoring the optic never atrophy?
I have a rare eye condition called choroideremia. Because of this life changing disease,I am completely blind in my right eye and what sight I have remaining in my left eye is like looking through a straw. Is there any help for myself and others in my situation ?
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.
I love science and new inventions solve problems
At 75 years of age I feel it very unlikely that I will be around to profit from these advances. A definite loss for advertisers who exploit vision to sell their products 😅
I wish they would have some clinical trial options for the PRPH2 gene it’s eating away at my eyesight and it will blind me at some point.
How you feel better ?
Oh wow only 600,000 pounds? Most will never be able to afford that. Thank you though. This is very informative but It’s also only for the rich.
For RP too?
How much on NHS?
How can we get this treatment in india? Any specialists in India to ungergo this procedure?
How can I get involved in a clinical trial for gene therapy because I have night blindness television I have retinitis pigmentosa so how can I get involved unless I live in Florida USA so how can I get involved in this gene therapy that will help restore my eyesight better
I have retinits pigmentosa where should I get treatment at it’s gene since born both eyes
My mother had also same problem where to get it
It’s all great but who can afford that, you would think the company would give it to the medical world for the good of mankind but it seems money is more important
Not really. It factors in research and also, with more time that passes, the price will go down.
Take genetic engineering for e.g, before it was extremely expensive, now, it has dropped significantly.
@@kylecastillo3021 does it, well I’m actually effected by this and losing my eyesight and having a £600.000 bill to fix it is immoral. Since when did it become the norm for people to decide to leave others in medical distress for profit and I only have to mention the people who invented antibiotics as an example of what good that has done to the world.
I’d prefer Being remembered as the person who cured many peoples blindness all around the world instead of a money grabbing company who became billionaires from it instead 🤦♂️
@@onlygazza I feel you. I really do. I too have medical issues that I wish I could treat with a top of the line treatment, but the main reason why it isnt cheap is because the government doesnt see it as a priorety. A private and exclusive hospital will always charge more for things like these because of the fact that they had to use external sources to get their treatment. If it was a government funded research and program, it would be way cheaper. Other factors play such as some governments allow companies to set whatever price they want.
My point is. Im not saying your lying or you dont know what you're talking about. My point is that not always do lastest medical treatment will be expensive because people want it to be expensive and set it that price.
@@kylecastillo3021 I actually went to moorfields hospital around a decade ago for a consultation and I just think that the people inventing this treatment would be remembered more for sharing the technology for the benefits of man and womankind than becoming super rich !
@@kylecastillo3021 yes you are absolutely right nobody can afford such expensive treatment I think we will have to wait until this price go down
Witch hospital is ??
Are side vision glasses are efficient for rp??
I have And Rp condition hoping restore my vesion, I'm from Philippines God bless you all 🙏
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.
Can Luxturna be used for total blindness of glaucoma ???
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!!!!
Great
Hopefully the cost comes down maybe I can afford this one day
My eye problem is retina pignotosa and please sir said to you sir or maam treatment to my problem solve sir
hey, I'm currently researching RP, if you are okay with discussing with me and my team with regards to this disease, could you please reach out to me?
The sound of the videos is not good
Will I be able to get a shot to avoid reading glasses?
What is the name of the condition
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!!!!
Can i get Retinitis pigmentosa treatment
Amazing news! So glad for these people!
My son has optice nerve atrophy since born he is now 16 years old😢
Hopefully the scientists can use this for nearsightedness as well, because the current laser surgery caused permanent damages to some people
This is a very protein specific gene editing process, absolutely nothing to do with eyeball shape or lens irregularities. It is for one of the 400 types of Inherited Retinal Diseases where there is miscoding of the many hundreds of genes that carry the recipe for visual proteins. The particular IRD is called Leber Amaurosis Type II. Start affecting babies and patients are usually legally blind by age 20 yrs. About 50% of those treated in time will receive some improvement. But, it does not restore those eye cells that have already died off.
@@jackccrofootjr7228, it turns out that myopia cannot be cured even by this, then what remains is a complete transplantation of eyeballs?
Hi everyone iam a Doctor but i got to know that i have rp at the age of 25 i was shocked to hear this and make my life terrible and this my earning period it becoming worst to live this life and nobody understand my condition and my dream of becoming doctor shattered. Iam in working age its very hard. I hope there must cure for this condition
Its a breakthrough in the world of medicine
What happened since then?