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.

Take Part Find out more

2019 NF Conference

Find out more about the 2019 NF Conference being hosted by our friends across the pond the CTF

Kate Swallow’s Fantastic Fundraiser at the Tipsy Pig

Find out more about the succesful and throughly enjoyed charity music event hosted by Kate Swallow at the Tipsy Pig

Support Specialist: One of Many Cases

Have a read about a specific case study detailing the kind of work our support specialists offer to those with NF

Thank You James Gamble!

James Gamble just completed an incredible fundraiser in which he has cycled a total of 980 miles for NTUK! Find out more here

Teagan Martin’s first day at Canterbury Secondary School

Have a read about the incredible young girl who continues to defy the odds here

Kloe van der Merwe - Our NF hero as told by Mum Candice

Hear about the incredibly brave young girl as told by her Mum Candice

Wass’ Everyday Battlers 10K Stratford Run

Wassim is running the 10K Stratford Run for Nerve Tumours UK. Here he explains his reasons as to why:

Megan’s Skyfall

Megan is undertaking a sponsored skydive for NTUK as part of her travels! Find out more here

Glen’s Half Marathon in Support of his Nephew Freddie.

Have a read about the special young boy who has inspired his uncle take on the New Forest Half Marathon

Become an NF Patient Representative