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
![](https://nervetumours.org.uk/images/made/images/common/preview_800_600_s_c1.png)
NF Said
Daisy takes on a 38-mile running challenge for her sister Millie, 1 mile a day for every person diagnosed with NF2 a year
Read More![](https://nervetumours.org.uk/images/made/images/common/1_800_600_s_c1.png)
Love Yourself - Hour of Power in Support of the NF community
Get your sweat on and spread the love this Valentine's day for our NF community!
Read More![](https://nervetumours.org.uk/images/made/images/common/Patrick_Walk_Day_1_image_2_370x280_800_600_s_c1.png)
Pat’s NF Fundraiser Walk
Read all about Patrick's incredible fundraising efforts to help others affected by NF!
Read More![](https://nervetumours.org.uk/images/made/images/common/Laura_26.5_mile_marathon_for_son_elliot__370x280_800_600_s_c1.png)
Laura’s Marathon effort!
Laura beats our 26.5 mile challenge and takes it to the next level - matching miles with donations, find out what she's up to
Read More![](https://nervetumours.org.uk/images/made/images/common/pexels-christina-morillo-1181307_370x280_800_600_s_c1.jpg)
Research call: Does neurofibromatosis affect how you feel about your body?
Find out how you can improve self-help methods for people living with neurofibromatosis
Read More![](https://nervetumours.org.uk/images/made/images/common/Celia_Baxter_Crafts_for_Nerve_Tumours_UK_Image_370x280_800_600_s_c1.jpg)
Stitched up by Celia
Get inspired by Celia's creative online haberdashery shop for Nerve Tumours UK!
Read More![](https://nervetumours.org.uk/images/made/images/common/Mobile_website_header_-_NF1_PN_study_-_370x280_800_600_s_c1.jpg)
NF1 with Plexiform Neurofibromas Study: information for patients and carers
Find out how you can help shape the future of NF1 healthcare
Read More![](https://nervetumours.org.uk/images/made/images/common/Changing_Faces_Covid_Impact_Survey_370x280_800_600_s_c1.jpg)
Changing Faces Impact of Covid Survey
Share your experience of covid19 with Changing Faces and help shape the support you need
Read More![](https://nervetumours.org.uk/images/made/images/common/faye_burdrige_370x280_800_600_s_c1.jpg)
Be as creative as Faye – Follow her social distance fundraising example!
Be inspired by Faye & take on your own creative fundraising idea this lockdown!
Read More