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

Best Film Nomination “Shine A Light on Neurofibromatosis” PM Society Digital Awards
Join the awards ceremony virtually this Wednesday 16th September
Read More
Act it Out Prototype App Trial
If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part
Read More
The Virgin Money London Marathon Goes Virtual
Sign up for your Virtual London Marathon experience Sunday 04.10.2020
Read More
Accessible Online Meetings for those with hearing impairment
Frances Harris talks to us about the difficulties faced by those with NF2 & hearing loss communicating online and solutions
Read More
Pipers to Paris - Ride for Neurofibromatosis
Read all about Mr. Cohen's epic 230 mile bike ride to help support those affected with Neurofibromatosis in the UK
Read More
Artificial Intelligence & Disability Recruitment
Creating fair processes for people with disabilities by the HR teams that are using artificial intelligence/face recognition
Read More
It’s a Kind of Magic
Mike Brennan has had to deal with the stigma as well as the symptoms of NF1, which he has battled since he was a young child.
Read More
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