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

Grace’s Story

Have a read of Grace's story and she overcame her insecurites surrounding her NF

Helpful Charities

Find some of the other helpful charities that may be able to support you here

Sophia and Harvey’s story

"Despite all that, Harvie is a happy little boy who enjoys nursery and loves his favourite things"

Lucy’s Story

"I love him, and I couldn't be without him, regardless of whether he was sick or healthy."

Jaycee’s Story

Have a read of Jaycee's incredible story and how she has overcome some major difficulties in her life.

Become an NF Patient Representative