NTUK has a new freephone number 0300 102 17 22 for the Helpline. The original 07939 046 030 still works for mobiles: https://lnkd.in/eiR93TA Monday, Wednesday and Friday 9am - 5pm
Nerve Tumours UK
Hospitals and Health Care
London, Greater London 455 followers
Providing better support for those living with nerve tumours and neurofibromatosis
About us
Nerve Tumours UK is the authoritative voice of over 26,000 people in the UK who are born with one of the neurofibromatoses. The charity seeks to expand knowledge of neurofibromatosis and nerve tumours and advance the care for those with the condition. Every day in the UK, a child is born with neurofibromatosis – some inherit the condition, others are affected by a random mutation. Neurofibromatosis can affect anyone: any ethnicity, class or sex. Nerve tumours occur in three genetic disorders of the nervous system: Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis. Each of these conditions has its own range of complications, which can be life-limiting and impairs the quality of life. For example, Neurofibromatosis Type 1 involves the nervous system, skin, eye and bone. It predisposes people to many complications, including tumours of the brain and spine; malignant peripheral nerve sheath tumours and breast cancer. In addition to the physical impact of nerve tumours, many people experience social and economic disadvantages. It is a particularly isolating condition because it is often met with prejudice and bullying. Evidence suggests that the condition leads to severe financial hardship in the third generation. Sadly, many health care professionals in the UK have little knowledge of nerve tumours and the manifestations of the neurofibromatoses. Obviously, early diagnosis is crucial. NHS provision is patchy, support depends on location. Some years ago, the charity launched a scheme to provide regional specialist nurse advisors, but due to a lack of funding, this is not yet available throughout the UK. Michael Fry – Chair, Nerve Tumours UK says, “It is the launch of a revitalised mission to raise awareness and improve outcomes for people affected by neurofibromatosis. We represent over 26,000 people, their families and friends who deserve greater support and greater understanding.” Visit our new website www.nervetumours.org.uk
- Website
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http://nervetumours.org.uk
External link for Nerve Tumours UK
- Industry
- Hospitals and Health Care
- Company size
- 2-10 employees
- Headquarters
- London, Greater London
- Type
- Nonprofit
- Founded
- 1981
- Specialties
- neurofibromatosis, neurofibromatosis type 1, neurofibromatosis type 2, schwannomatosis, legius syndrome, ethical fundraising, and advice and guidance for neurofibromatosis
Locations
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Primary
44 Coombe Lane
1st Floor
London, Greater London SW20 0LA, GB
Employees at Nerve Tumours UK
Updates
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Thank you Mr W for generously donating your winnings. The next Super Draw prize of 2024 is a luxury getaway worth £2000! Plan a dream holiday or take the cash instead. Buy your tickets by Saturday 31 August & help us support all those with #NF. Play the #NTUKLottery. https://lnkd.in/dHBTPQVg #InItToWinIt #CharityFundraising #NFCharityLottery
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Are you a carer for someone with a #Neurological condition? Fill out #MyNeuroSurvey and help to improve treatment, care and support for everyone affected by neurological conditions. As members of the The Neurological Alliance, Nerve Tumours UK is committed to working together to improve neuro support & services across the UK. Take part: https://lnkd.in/ezxgNSEi #NFSupport #MakeNFVisible
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Are you a child with a #Neurological condition? Fill out #MyNeuroSurvey and help to improve treatment, care and support for everyone affected by neurological conditions. As members of the The Neurological Alliance, Nerve Tumours UK is committed to working together to improve neuro support & services across the UK. Take part: https://lnkd.in/ezxgNSEi #NFSupport #MakeNFVisible
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Are you an adult with a #Neurological condition? Fill out #MyNeuroSurvey and help to improve treatment, care and support for everyone affected by neurological conditions. As members of the The Neurological Alliance, Nerve Tumours UK is committed to working together to improve neuro support & services across the UK. Take part: https://lnkd.in/ezxgNSEi #NFSupport #MakeNFVisible
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Calling all thrill seekers to take on their biggest challenge yet! Fly through the sky to support the #NFCommunity. With dates throughout the year and in various locations across the UK, there are boundless opportunities for you to keep the #GoodVibes going this summer. Find out more: https://lnkd.in/euN7tf9S #NTUKFundraiser #MakeNFVisible #Skydive
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Are you in need of a #SwimSerpentine place, with official spots sold out? Nerve Tumours UK has 2 mile places available. Don't delay, final spaces are going fast for the open water #SwimmingFestival! Join #TeamNTUK & be part of our largest swimming team to date at this iconic challenge in London's Hyde Park on 14 September 2024. The head office team look forward to meeting you and enjoying a post swim celebration to thank you for taking part and helping to raise awareness and vital funds for the charity. Register to swim for #NTUK: https://lnkd.in/eBpSxZdu #MakeNFVisible #NFFundraiser
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Take part in @contact-a-family free online workshops for parents in London and the Midlands caring for children with #Autism Workshops include: Understanding meltdowns and shutdowns; Supporting play; Understanding Sensory Processing & Supporting Siblings Sign up: https://lnkd.in/eDebzU_r #NFSupport
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New products just dropped to our #SummerShop! Our new plum colour #NTUK items symbolise new beginnings, enthusiasm & fresh energy! From a brand new #BaseballCap to #WaterBottles, #DrawstringBag & more, we can all make #MakeNFVisible this summer. NTUK Shop https://lnkd.in/es_cZngG
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Nerve Tumours UK attended the Grant-holder Showcase hosted by the VTCT Foundation. Find out more about this event which showcases the projects and research that they support, aiming to improve lives of those living with a #VisibleDifference: https://bit.ly/3WFcH7a #NFSupport #NFResearch #AppearanceCollective
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