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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NF1 & our Xander
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RideLondon FreeCycle Sunday 29th May
Join Nerve Tumours UK on the official RideLondon Day 29th May 2022
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RAISING THE ROOF COMEDY NIGHT
First night on the NTUK 40 years Comedy Circuit 2022 at London's Backyard Comedy Club
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Chloe’s NF1 story
Chloe gives an honest assessment about coming to terms with having NF1 and how it has made her determined & strong
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“Happy Easter”
A message from Karen, our Charity Director, wishing you a very Happy Easter!
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Lisa helps Shine a Light on Neurofibromatosis in Belfast
Lisa has NF1, & lobbied the Belfast Lord Mayor to get Belfast City Hall lit up blue on Neurofibromatosis Day, 17th May
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Alex’s NF1 story
Alex describes her life with NF1, growing up in care, doing adaptive boxing & gym classes & getting NCFE Care qualifications
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Sumeeth’s Schwannoma story
Sumeeth, thought nothing of a muscle twitch after a hangover - it was the first symptom that led to a Schwannoma diagnosis
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Laura’s NF1 story
Laura is doing a skydive fundraiser to raise awareness & funds for NTUK, after her daughter was diagnosed with NF1
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