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
_370x280_800_600_s_c1.jpg)
The International Rare Disease Showcase 1st – 3rd February 2022
The International Showcase is a unique & important event, with interactive sessions taking place from 1st-3rd February 2022
Read More
Grace’s NF1 story - Nothing stops me
Grace tells us how her NF1 hasn't stopped her from being active and achieving her goals
Read More
Mia’s NF1 story
Bridie & Warren describe their 17 month old daughter Mia's diagnosis with NF1
Read More
Richard & Diana’s 1,000,000 metre new rowing challenge
Diana & Richard have taken on a 1,000,000 metre rowing challenge in 100 days to raise funds & awareness
Read More
A Message from our Charity Director
A message from Karen, our Charity Director, on looking forward to a special 2022
Read More
Childhood Neurological Conditions Survey Part 2
Find out how you can help shape the future of treatment for Childhood Neurological Conditions such as Neurofibromatosis
Read More
Graham’s Super Nine Shines A Light on NF
Graham's 7 year old great-nephew Nathan is his inspiration for his epic challenges to fundraise for NTUK
Read More