The REINS Collaboration Recruiting Patient Representatives

Author: REiNS Collaboration

Published On: 01/14/2021

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 Collaboration (Response Evaluation in Neurofibromatosis and Schwannomatosis) is looking for patients and caregivers to help in the fight to cure all types of NF by helping to design clinical trials. REiNS is an international effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2, and schwannomatosis. Since its inception in 2011, the REiNS International Collaboration has played a key role in the creation and dissemination of outcome measures for clinical trials of neurofibromatosis and schwannomatosis. To learn more about REiNS, please watch their video here.

Joining the patient representative program 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.

If you are interested in joining the patient representative program, please fill out this short form and learn more about what the role entails here.