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
_800_600_s_c1.jpg)
Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2020 NHS England NF2 Meeting
Find out what went on at the NF2 National Conference and how patient feedback has played a crucial role in improving services
Read More
Meeting Megan
Read about how Megan channels her NF1 challenges and uses it as a drive for positive change!
Read More
Nurse’s Conference 2020
Read about how our specialist nurses adapted to covid19 and supported our NF community
Read More
Children’s Tumor Foundation - NF Forum 2020 Moves Online!
Find out how you can take part in CTF's 2020 online NF Forum
Read More
Pauline & Helen Boughen’s PIP Journey
Learn how Helen & her mum Pauline overcame their difficulty with getting the benefits they deserved with Julie Ann Evans help
Read More
Pipers Rocks
Read about Pipers School amazing Rocktastic fundraising efforts for Nerve Tumours UK
Read More
Your NF questions answered directly from the Top!!
Get answers to your NF questions directly from our medical advisors
Read More