Easter Message
06 April 2023
With our very best wishes for “ A Very Happy Easter” from all staff and trustees at Nerve Tumours UK
It has again been a particularly busy first quarter to the year. We have been working on developing the website, particularly aimed at healthcare professionals, and with our partners on some very interesting projects.
Very soon we will also skip into May, World Neurofibromatosis Awareness Month, but can we still call it that?
The medical profession have thrown down a challenge this year. As you may know, Neurofibromatosis Type 2 has been renamed NF2-related Schwannomatosis, and so we have been chatting to our partners overseas, particularly the Children’s Tumor Foundation in the USA, as to how we should now term the group of conditions that we represent and support, as the word “neurofibromatosis” should no longer be used as a group name. It looks like we obviously made the correct decision, in 2018, to call ourselves Nerve Tumours UK. In the meantime, our website, etc, will be in a state of flux until a group name is agreed, so please bear with us.
The team are looking forward to seeing many of you at the London Marathon in April and at the London-Essex Bike Ride in May, and may I take this opportunity to both thank all of our fundraisers and to wish them a safe and enjoyable day. Quite simply, without your support and fundraising, we would not be able to deliver our services.
Access to support services are still our key strategic objective, and with this you have the continued, complete and unwavering backing of the entire charity. We constantly look at how we can better meet all of our objectives, and as such we will again launch a survey on 01 May, asking for feedback from the community. It is so important that you have your say, so please do participate in this, and all of the surveys or research questionnaires that we distribute, on behalf of our research collaborators.
Please also look out for our activities during May, and help us to raise much needed and greater awareness of Neurofibromatosis Type 1, NF2-related Schwannomatosis and Non-NF2-related Schwannomatosis!
With my very best wishes,
Karen
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Mobile Device Usage by Young Children with Special Educational Needs (SEN) or Disabilities in Their Home
Research: exploring current use of mobile devices in the home - parents' perspectives & experiences
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NF2 and Radiotherapy
Research: Studying the risk of serious side effects of radiotherapy in people with NF2
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Sally’s NF1 story
Sally tells a story that will resonate - devastation at diagnosis, gratitude for incredible support & making the most of life
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National NF2 Meeting
A report from the annual National NF2 meeting, with NTUK in attendance
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NF International and National meetings in Manchester
NTUK reports back from the NF Patients Community Day and the 20th European Neurofibromatosis Meeting in Manchester
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Mindful Parenting Study
Research study: Mindful Parenting Programme for parents or carers of children aged 4-16 living with a visible difference
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Adam Buxton and some colleagues - NTUK Comedy Night
Join us at the Union Chapel, London on Thursday 24th November for the latest comedy night to celebrate 40 years of NTUK
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We know 26, 500 people who need your help
To expand our Specialist Neurofibromatosis Network, we need to continue raising awareness of what we do
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The New National Helpline
The National Helpline is expanding to Monday, Wednesday and Friday, from early October
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