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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Shine a Light on Neurofibromatosis
World Neurofibromatosis Awareness Day - May 17th. Help us raise £ 26,500 for 26,500 people in the UK who have nerve tumours.
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Jem Musselwhite and Rich White are fundraising by walking the Pilgrims’ Way
Jem and Rich are walking more than 100 miles to raise money for Nerve Tumours UK. Find out more here:
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Meet Rachael
Rachael Reynolds is a 43-year-old mother of four, living in Huddersfield. She recently appeared in the Channel 5 programme,
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Meet Our Two Marathon Runners from China
Meet our two runners from China who like to partake in marathons across the globe.
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Andrew Leak is set to Complete 10 London Marathons!
Andrew Leak is about to complete his mission of running 10 London Marathon's! Find his press release here
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Meet Gemma
Gemma Barnish has NF2 and has recently gotten married, find out more about her intriguing life here:
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Kidz to Adultz Exhibitions
Kidz to Adultz offer a number of free exhibitions across the year to offer adivce and information on living with a disability
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Centre for Appearance Research at UWE want you to help test online support for people with Nerve Tumours
Centre for Appearance Research are looking for people with Nerve Tumours to test their new online support
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Support Specialists Challenges and Ambitions
Read more on both Rachel and Carolyn's views on their ambitions and challenges faced as Support Specialists
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