Become an NF Patient Representative
15 January 2021
As patients and caregivers of those with Neurofibromatosis Type 1, Neurofibromatosis Type 2, or Schwannomatosis, your voices and lived experiences play an important role in determining the direction that research should take!
The REiNS (Response Evaluation in Neurofibromatosis and Schwannomatosis) Collaboration is looking for patients and caregivers to help in the fight to cure all types of NF by helping to design clinical trials. This is a chance for you to make a real difference in finding treatments for these conditions. A scientific background is not necessary – lived experience with neurofibromatosis and schwannomatosis is. We are looking for people from all backgrounds, including people of all genders, races, ethnicities, education level, and health status.
For more information about REiNS, please watch this video at
If you are interested in joining the patient representative program, please click the link below.
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Joanna’s story
Joanna highlights the importance of women with NF1 receiving mammograms, and being able to train for the 2023 London Marathon
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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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