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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Wass’ Everyday Battlers 10K Stratford Run
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Have a read about the incredible 7 year old fundraising girl who is supporting research into NF1
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See our Christmas Card winning illustration here
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Have a read about the findings from the UWE's "Looks and Life" Study
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Have a read of Kate's inspiring story including the introduction of her beautiful daughter Esme, who has NF1, into the world.
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