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

No Laughing Matter
Tom is a former journalist, here he describes his journey from music journalism to comedy, & what his NF2 has to do with it
Read More
Shine A Light on Neurofibromatosis 2020
Find out what we're up to for our Shine A Light campaign this year!
Read More
Statement by Michael Fry our Chair of the Board of Trustees
The impact of the corona virus on the charity sector and Nerve Tumours UK's continued support to those affected by NF
Read More
NF1, Plexiform Neurofibromas Market Research Study
Find out more about an NF1, Plexiform Neurofibromas market research survey
Read More
Statement by Rachel Jones & Rebecca Rennison our Specialist Neurofibromatosis Nurses UK
A statement on coronavirus by Rachel Jones & Rebecca Rennison specialist Neurofibromatosis nurses in the North East & Cumbria
Read More
Statement by Samantha Gaden our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Samantha Gaden specialist Neurofibromatosis nurse in the North West
Read More
Statement by Melanie Murrell our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Melanie Murrell specialist Neurofibromatosis nurse in the West Midlands
Read More
Statement by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
A Statement on Coronavirus by Carolyn Smyth Lead Specialist Neurofibromatosis Nurse UK
Read More
COVID - 19 News from Children’s Tumour Foundation our partners in the US
Covid - 19 News from Children's Tumour Foundation our partners in the US
Read More