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
_800_600_s_c1.jpg)
World NF Awareness Month 2025: In Review
A look back at some of the highlights of World NF Awareness Month, May 2025.
Read More_1_800_600_s_c1.jpg)
Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
Read More
Shine A Light on NF May 2025
The Shine A Light on NF 2025 awareness campaign had 176 buildings around the UK & the Republic of Ireland lit up blue!
Read More_800_600_s_c1.jpg)
Mohamed’s NF Story
Mohamed opens up about his NF journey and why he's now thriving after being diagnosed.
Read More
Do charity ads get on your nerves?
The 4th NTUK and RBH digital media awareness campaign features a cheeky attention grabbing advert
Read More
Laura’s NF1 Awareness Story
Laura shares her NF1 story and tells us how she is raising awareness for World NF Awareness Month
Read More_1_800_600_s_c1.jpg)
Living with Neurofibromatosis Type 1: A Journey of Resilience, Transformation, and Impact
Our new charity ambassador, Amit Ghose, shares his inspirational story.
Read More_1_800_600_s_c1.jpg)
NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
Read More