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.
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Rotary’s Summer Evening Jazz Concert in aid of NTUK
Find out more about the amazing Jazz Concert that was hosted in aid of NTUK here:
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K-Star Wrestling in aid of NTUK
Find out more about the successful wrestling event that took place in aid of NTUK
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2019 NF Conference
Find out more about the 2019 NF Conference being hosted by our friends across the pond the CTF
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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
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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
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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
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Teagan Martin’s first day at Canterbury Secondary School
Have a read about the incredible young girl who continues to defy the odds here
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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
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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:
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