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
![](https://nervetumours.org.uk/images/made/images/common/CAR__UWE__VTCT_Logo370x280_800_600_s_c1.jpg)
Centre for Appearance Research (CAR) and The VTCT Foundation Virtual Showcase 28th July 2020
Get the latest updates on the Centre for Appearance Research's work into helping people with Visible Difference
Read More![](https://nervetumours.org.uk/images/made/images/common/Wales_Nurse_Job_Post_banner_edit370x280_800_600_s_c1.jpg)
Specialist Neurofibromatosis Nurse - Wales
Find out more about our latest position available in Wales
Read More![](https://nervetumours.org.uk/images/made/images/common/picsea-EQlTyDZRx7U-unsplash-preview_800_600_s_c1.jpg)
Covid-19 Impact on Wellbeing in Families of Children with Rare Neurogenetic Disorders (CoIN Study)
Find out how you can get involved
Read More![](https://nervetumours.org.uk/images/made/images/common/Julie_Ann_Evans_370x280_MAgazine_4_article_copy_2_800_600_s_c1.jpg)
Julie Ann Evans
Learn how to navigate the benefits system for people with NF & how to approach Personal Independence Payments (PIP)
Read More![](https://nervetumours.org.uk/images/made/images/common/Katie_1_370x280_-_Preview_800_600_s_c1.jpg)
Katie’s Story
Read Katie's inspirational NF Story & how she uses running to overcome her problems
Read More![](https://nervetumours.org.uk/images/made/images/common/OneMoreNurse_Website_370x280_800_600_s_c1.jpg)
#OneMoreNurse
We need your help to continue our Specialist Neurofibromatosis Support Network
Read More![](https://nervetumours.org.uk/images/made/images/common/NF1_Army_-_Team_10_Million-preview_800_600_s_c1.jpg)
NF1 Army’s incredible 10 million steps fundraiser!
read about team 10 million steps fantastic lockdown fundraising efforts
Read More![](https://nervetumours.org.uk/images/made/images/common/Billy-Logan-NF1-Story-NTUK-370x280_800_600_s_c1.png)
Billy & Logan’s Story
Read about how engaging in sport supports them both with NF1 related issues
Read More![](https://nervetumours.org.uk/images/made/images/common/Jacob_Averyard_-_The_One_Show_-_Image_4_-_Year_Book370x280_800_600_s_c1.jpg)
The One Show Year Book in Lockdown
Jacob & Ella take part in The One Show's Nationwide Yearbook for students in secondary school
Read More