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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Our new charity ambassador, Amit Ghose, shares his inspirational story.
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NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
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Take part in this research study which will explore the connection between diet, fatigue and NF1 in children and young adults
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NTUK is delighted to introduce you to our three new ambassadors, Emily Owen, Georgia Baum & Amit Ghose.
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London Marathon 2025 Team NTUK
Congratulations and a big THANK YOU to Team NTUK for their superb efforts
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Read Ian's story and why he's going the extra mile for NF awareness and his daughter Emily
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Meet our 2025 London Marathon fundraisers—each running to support those affected by NF. Read & share their stories.
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