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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![](https://nervetumours.org.uk/images/made/images/common/848d9823-65f9-42e7-8ae9-e7ab055a62ba_(2)_370x280_800_600_s_c1.jpg)
Celtic Crossing NTUK fundraiser
On Wednesday 28 June, a team of 8, led by Paul Aubery, paddled from the Isles of Scilly to Sennen Cove in Cornwall.
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NF Awareness Day Fundraiser at Fyling Hall School
Bea's school held a blue & green themed fundraiser on World NF Awareness Day
Read More![](https://nervetumours.org.uk/images/made/images/common/image_(2)_370x280_800_600_s_c1.jpg)
Eden Study
Investigating early social, communication and attention development in babies who have NF1/ or a parent has NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/image0_(13)_370x280_800_600_s_c1.jpg)
Bethany’s South Coast Challenge
Bethany is taking on the 25km South Coast challenge to give back after recovering from nerve tumour surgery
Read More![](https://nervetumours.org.uk/images/made/images/common/Eden_P_study_370x280_800_600_s_c1.jpg)
Eden-P Research Study
Participants required for research study for pregnant women who have a family history of NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/inform_your_GP_370x280_800_600_s_c1.jpg)
Resources Survey: Initial Diagnosis
Take part in our survey and help shape Nerve Tumours UK's support service for those newly diagnosed with NF
Read More![](https://nervetumours.org.uk/images/made/images/common/NF1_(1)_370x280_800_600_s_c1.jpg)
Appearance Collective NF1 support survey
Appearance Collective, Centre of Appearance Research (UWE) online survey on what support is needed for those affected by NF1
Read More![](https://nervetumours.org.uk/images/made/images/common/Mel_swimming_370x280_800_600_s_c1.jpg)
Shine A Light - Swimming for World NF Day
Mel, one of our Specialist NF Nurses, will be swimming 17 miles to Shine a Light during World NF Month
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