GLIA-CTN Patient Advocacy Committee
Meeting Recording and Document Library
This online library of advocacy meeting recordings, minutes, and supporting documents/slides is intended to be used exclusively by advocacy leaders affiliated with the GLIA-CTN Advocacy Committee. We are firmly committed to transparency through the distribution of information and resources to members of the broader advocacy and patient communities; however, recognizing that past meetings of the GLIA-CTN Advocacy Committee contain privileged and sensitive information, the materials on this page may not be downloaded and should not be distributed to a broader audience.
Quarterly All-Hands Meetings (FY22)
First Quarterly Meeting (September 27, 2021)
Meeting Slide Deck: https://chopri.app.box.com/v/PAGSLIDES9272021
GLIA-CTN Committee Handbook: https://theglia.org/s/GLIA-CTN_Committee_Handbook_V12.pdf
RDCRN Committee Handbook: https://theglia.org/s/RDCRN_Committee_Handbook_08132021.pdf
Second Quarterly Meeting (January 24, 2022)
Meeting Slide Deck: https://theglia.org/s/GLIA-CTN_Advocacy_Meeting_Slides_01242022.pdf
Advocacy Workgroup Meetings (FY22)
Patient Registry Panel Meeting (December 14, 2021)
Patient Registry Bootcamp Meeting (March 29, 2022)
Meeting Slide Deck: https://theglia.org/s/GLIA-CTN_Registry_Bootcamp_Slides_03292022.pdf
Questions?
If you have questions, or would like to request additional information not included below, please do not hesitate to reach out to the GLIA-CTN Advocacy Committee Chair, Erica Barnes (demo0050@umn.edu), Co-Chair, Kristie DeMarco (kristiedemarco@globaldarefoundation.org), or Program Manager, Omar Sherbini (sherbinio@chop.edu). On behalf of the GLIA-CTN, we are incredibly grateful for all that you do, and we hope that this page will serve as an additional source of information in a growing arsenal of resources available to leaders who are dedicated to advancing advocacy efforts in the leukodystrophies.