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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Benjamin’s NF1 story
11 year old Benjamin has NF1 and is the inspiration for his family's fundraising
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Lynne Highy joins our team of Specialist NF Advisors
Read all about the newest addition to our team.
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NF Academy 2025: Georgia’s Blog
NTUK ambassador Georgia Baum shares her transformative experience of attending the NF Academy 2025 in Barcelona
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Craig’s story
Craig describes his mosaic NF2 related hearing loss, and how a cochlear implant & hearing aids have changed his life
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George’s Schwannoma Story
George shares his experience of being diagnosed with a schwannoma and why he's lacing up for NF awareness.
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JoJo’s NF1 Story
JoJo shares how her NF1 journey has affected her; how her pain and loss have become foundations of courage and resilience.
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Tristan’s Story: Hope & Resilience
Discover Tristan's NF1 story: Finding home, hope & the power of sport.
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10 mile walk for Lily
Read more about the 10 mile sponsored walk for Lily, organised by Claire, with her nursery team, family & friends taking part
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NF & Sport: Joy’s Journey
Find out more about the impact of sport on Joy's NF1 journey & how running changed her life forever.
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