Patient Representatives Working Group
Chair: Scott Plotkin, MD
This new REiNS working group consists of 30 patient representatives, including patients with NF1, NF2, and schwannomatosis, as well as caregivers, selected through an application process in the fall of 2017. The group is in the process of devising their goals, outlining specific tasks, and organizing various subgroups that currently are working on education and training of patient representatives, fundraising, and meeting planning.
Patient Representative Education Subcommittee
Chair: Andrea Gross, MD
The REiNS Patient Representative Education Subcommittee is focused on developing an educational curriculum for REiNS’ patient representatives. We are working to review and develop both online and in-person sessions and plan to include information about the design and conduct of clinical trials in general, as well as NF/Schwannomatosis specific topics. We are always happy to have new members from the larger working group to help provide input and feedback on our educational plans.
Patient Representative Training Materials