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.
Filter News

Appearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
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Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
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Sarah’s Story
Sarah has NF1 and works full time for the NHS check out her intriguing story here
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Laura’s Story
Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:
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Visible Difference Equality Law Research: summary of findings
Find out more about the results here:
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The Galloway Family and their “amazing” four year old Ruby
Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.
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“Framing the face: History, Emotion, Transplantation” a blog from James Partridge
Find out more about the blog and what is concerns here:
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A Spooktacular Halloween day for NTUK
Find out more about the wonderful fundraising event here:
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Nicks Triathlon in Support of his daughter Eilidh
Find out more about Nick's Triathlon and his daughter's experiences with NF1 here:
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