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.

Take Part Find out more

Filter News

Search by keyword

Filter by Date

Centre for Appearance Research NF Survey - Results

Find out how you can take part in CAR's online survey about NF parenting and caring experiences.

Take Part in Dexter’s NF Documentary Project

Dexter shares his motivations for taking on his NF documentary project, find out how you can get involved.

Share your Covid-19 Story - Survey Results

Embracing Complexity share the results of their impact of Covid19 survey, find out more

Sarah’s Journey

Read Sarah's personal journey with NF

Hour of Power – Love Yourself Valentine’s Day workout for NF

Thanks to all those that got their hearts pumping this Valentine's Day for our NF community!

Rare Disease Day 2021 and Rare Reach Festival

Find out how you can get involved in the first ever Rare Reach Festival and make sure the Rare communities voice is heard!

Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

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

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!