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.
Filter News
Advice: Travelling With NF
Learn how to navigate travel with NF confidently. Essential tips and resources for smooth, stress-free journeys by train, pla
Read MoreJoin the NF1 Cutaneous Neurofibroma Consortium Project
Join a groundbreaking NF1 study to help develop better treatments for neurofibromas. Open to adults with a clinical/genetic N
Read MoreNottingham NF1 Information Day 2024
Join us for an insightful NF1 Information Day in Nottingham on October 5, 2024. Expert talks, Q&A, and community connection.
Read MoreEverybody is born a Champion
NTUK & RBH's 3rd campaign features GB Paralympian Thomas Young, who has NF1, and celebrates those living with NF
Read MoreMario Antona’s NF2 Story
In memory of his dad, who passed away from NF2, Mario cycled 500 km across the Pyrenees to raise funds for Nerve Tumours UK.
Read MoreEva-Hope’s NF2 story
Tahlia describes how the family felt after receiving daughter Eva-Hope's NF2 diagnosis
Read MoreMy Neuro Survey 2024
Fill out #MyNeuroSurvey and help to improve treatment, care and support for everyone affected by neurological conditions.
Read More