Committed to supporting and campaigning for individuals who suffer from Neurofibromatosis and Schwannomatosis.
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Nerve Tumours UK provides support and information, as well as campaigns and raises awareness on behalf of over 26,500 people in the UK who have Neurofibromatosis (NF1 and NF2) and Schwannomatosis. We’re here to improve lives for people with Neurofibromatosis, by making sure those affected have access to the help they require.

How You Can Help
  1. Simply book your next holiday with Charitable Travel and tell us you want to support Nerve Tumours UK. The charity will then benefit from the free donation you can make as part of the booking process. To read more about how this works, head to our ‘How We Do Good‘ page.
  2. If you want to make a donation to Nerve Tumours UK and you are not booking a holiday, click here to visit their website.
  3. Visit nervetumours.org.uk to sign up to newsletters, and follow the
    Nerve Tumours UK social media pages, and help spread the word.
How You Can Help
How You Can Help
  1. Simply book your next holiday with Charitable Travel and tell us you want to support Nerve Tumours UK. The charity will then benefit from the free donation you can make as part of the booking process. To read more about how this works, head to our ‘About Us‘ page.
  2. If you want to make a donation to Nerve Tumours UK and you are not booking a holiday, click here to visit their website.
  3. Visit nervetumours.org.uk/to sign up to newsletters, and follow the Nerve Tumours UK social media pages, and help spread the word.
  1. Simply book your next holiday with Charitable Travel and tell us you want to support Nerve Tumours UK. The charity will then benefit from the free donation you can make as part of the booking process. To read more about how this works, head to our ‘How We Do Good‘ page.
  2. If you want to make a donation to Nerve Tumours UK and you are not booking a holiday, click here to visit their website.
  3. Visit nervetumours.org.uk to sign up to newsletters, and follow the
    Nerve Tumours UK social media pages, and help spread the word.

About Us

Nerve Tumours UK funds a unique Specialist Support Network for the 26,500 plus, children and adults, diagnosed with Neurofibromatosis (NF), one of the most common neuro-genetic conditions, that causes tumours to grow on nerve endings, with many associated medical issues. A predominantly community-based service, comprised of regional Specialist NF Nurses, a National Helpline, Information Days, Medical Guidelines and Leaflets, and offering both medical and non-medical advice and support, not just in clinics, but in schools, in the workplace, navigating the welfare system, and acting as advocates in tribunal and legal cases. These Specialists are highly qualified medical professionals and therapists and link with the many other professionals involved in the care of anyone with NF.

The charity, formed with a membership base, was established nearly 40 years ago by a group of parents, each having a child diagnosed with Neurofibromatosis. Today, the Board of Trustees continues its links directly to the membership base, as it is partly composed of people with the condition, those with a family member diagnosed with NF, and by medics specialising in NF. The core aims of the charity were, and still are, driven by the needs of the NF community, particularly and primarily for those diagnosed with the condition, but now also from the needs of the medical profession, who we also advise and support.

 

We are overseen by a Medical Advisory Board (MAB), comprising fourteen leading experts in the NF field, and chaired by the leading expert in Europe, who is also named in the top two in the World.  Steered by the MAB, our service continues to meet the communities ongoing needs as well as embrace new initiatives and ideas as medicine and research progresses. Our services are consistently evaluated through patient feedback, consultation with medical professionals including the four English Specialist Centres for NF. 

Support for all

Families affected by NF contact the team for a wide range of reasons as it is a very complex and varied condition. One of our most important services is a Schools Advisory Service for teachers and parents of children with NF, who are experiencing difficulties at school. Over 60% of patients will have learning disabilities, yet support is often non-existent or inappropriate, which can make the child’s experience at school difficult and unproductive. The Specialists link with the child’s associated professionals (Occupational Therapists, Physiotherapists, Speech & Language Therapists and Child & Adolescent Mental Health Teams) and give advice on how to help these children. Likewise, in the workplace, we offer an advisory service for employers, who will not have heard of Neurofibromatosis, and will not be aware of how the condition may affect an individual. We can host training sessions for HR and senior managers. Adults may also need help with information on benefits, how the benefit system can help them, and how to access and apply for such information and support.

A lifeline for thousands

We are a “one-stop-shop” for people with NF and each member of our Network currently reaches out to between 500-3700 families per year, so thousands of families affected by Neurofibromatosis have a better quality of life because of this medical, practical and emotional support. New referrals come along each week, yet without our Specialist Support Network, there is no support for these patients elsewhere. We anticipate that for each person with NF that we help, we also help on average 8 members of their wider network thus helping hundreds of thousands.

People diagnosed with NF are both vulnerable and often isolated, and are immensely distressed by the current situation, as some of their complications make them more susceptible to catching Covid-19. NF is not well understood by most of the medical profession, most GPs will have only a handful of patients on their list, so their experience is likely to be limited and non-medical professionals may have little or no knowledge of the condition. Our team will link individuals to other resources thus helping to achieve some sense of control in a situation that feels potentially threatening and unsafe.

Get in touch

Location

Nerve Tumours UK, First Floor, 44 Coombe Lane, London, SW20 0LA

Helpline: https://nervetumours.org.uk/help/line

INForm your GP/School/University/Workplace: https://nervetumours.org.uk/help/inform

Charity and Company

Registered charity number 1078790 and SC045051.

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