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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![](https://nervetumours.org.uk/images/made/images/common/Helen_Tomkins_370x280_800_600_s_c1.jpg)
Meet Helen
Helen is the Specialist NF Advisor for Devon and Cornwall and is based at Derriford Hospital in Plymouth.
Read More![](https://nervetumours.org.uk/images/made/images/common/Rebecca_Rennison_370x280_800_600_s_c1.jpg)
Meet Rebecca
Specialist NF Nurse Rebecca is Lead Nurse, NTUK and is based at the Genetics Institute at the Centre for Life in Newcastle
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_Neuro_Alliance_Huntingtons_logos_370x280_800_600_s_c1.jpg)
World Mental Health Day 2023
NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services
Read More![](https://nervetumours.org.uk/images/made/images/common/research_images_370x280_800_600_s_c1.jpg)
CAR Research visible difference experiences during recruitment
Research participants required, find out more and take part
Read More![](https://nervetumours.org.uk/images/made/images/common/NF_Academy_group_shot_3_370x280_800_600_s_c1.jpg)
NF Academy 2023 - Ella’s Blog
Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe
Read More![](https://nervetumours.org.uk/images/made/images/common/Sadali__Sanjana_370x280_800_600_s_c1.jpg)
University of Manchester Research
Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester
Read More![](https://nervetumours.org.uk/images/made/images/common/Manchester_Uni__NHS_logo_370x280_800_600_s_c1.jpg)
New Research Study for Children and Young People with NF1
Find out more about the study and how you can participate here
Read More![](https://nervetumours.org.uk/images/made/images/common/national-cancer-institute-bwMhq_itmMU-unsplash_370x280_800_600_s_c1.jpg)
Neurofibromatosis Type 2 name change
The new name for Neurofibromatosis Type 2 is NF2-related-Schwannomatosis (NF2)
Read More![](https://nervetumours.org.uk/images/made/images/common/Jensen_1_370x280_800_600_s_c1.jpg)
Jensen’s NF1 story
Stuart describes Jensen's first days post birth, subsequent diagnosis of NF1 plus his & wife Claire's hopes for his future
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