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

Becky’s Story
From dealing with her family's NF1 to improving her fitness and running marathons, have a read of Becky's amazing story here:
Read More
“Charity Shave Off” for NF in Northern Ireland
Janice and her family recently held a charity shave off in Northern Ireland. Find out more about the event here:
Read More
Blackpool Magic Convention 2020
Find out more about the convention in aid of NTUK and how you can get involved here:
Read More
Reflections on 2019
Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:
Read More
Helen’s Story as told by her Mum Pauline
Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:
Read More
Nicola’s NF2 Journey
Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:
Read More
Making the Future of Work inclusive of persons with disability
Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace
Read More
The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
Read More