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

Nicola’s NF2 Journey

Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:

Making the Future of Work inclusive of persons with disability

Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace

The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing

Find out more about the debate recently undertaken at The Royal Society here:

Appearance Matters: Prof Diana Harcourt and Maia Thornton

Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:

Jane Frances

Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF

Sarah’s Story

Sarah has NF1 and works full time for the NHS check out her intriguing story here

Laura’s Story

Read about Laura's experience of undergoing surgery to remove a tumour from her spine here:

Visible Difference Equality Law Research: summary of findings

Find out more about the results here:

The Galloway Family and their “amazing” four year old Ruby

Have a read about the incredibly brave young Ruby Galloway (NF1) and check out their previous and future fundraiers.

Become an NF Patient Representative