Neurofibromatosis Educational Meeting
Virtual Zoom Meeting
Wednesday, April 2, 2025
8 pm ET, 7 pm CT, 6 pm MT, 5 pm PT
Join Dr. Paul Moots, Dr. Vanessa Merker, and the NF Network as they explore clinical trials and discuss how you can contribute from home to help shape the future of neurofibromatosis (NF). Following this presentation, learn how to have Productive Conversations With Healthcare Providers (HCPs), led by Patient Education Manager Mike Sager.
Paul Moots, M.D.
Resources available for people with neurofibromatosis to find research opportunities near and far from home
This talk will highlight ways to lower the barriers to participating in research
Dr. Moots is the President of the Board of NF Tennessee and a Board Member of the NF Network. He is a neurologist and neuro-oncologist, as well as the former Director of the Neurofibromatosis Clinic at Vanderbilt University Medical Center. Throughout his 34-year career, Dr. Moots has participated as an investigator in 38 clinical trials, primarily focused on gliomas and other nervous system tumors, including MEK inhibitor trials for plexiform neurofibromas.
Vanessa Merker, PhD
The growing movement to "decentralize" clinical trials
Dr. Merker will share about this, and describe two trials that people with NF1 can do entirely from home and their local primary care provider's office. The My NF Guide trial and the My NF Guide PEER study are testing whether new educational resources can help people with NF1 and their doctors learn about NF1 care, and get more of the NF1-related exams and tests they need during their annual check-ups.
Dr. Merker is a health services researcher at Massachusetts General Hospital and an Assistant Professor of Neurology at Harvard Medical School. Dr. Merker serves as the Director of Research at the Mass General Family Center for Neurofibromatosis and Schwannomatosis, where she conducts research to improve the accessibility, quality, and patient-centeredness of clinical trials and clinical care for all types of NF.
The event is free, but RSVP is required.
All ages are welcome. We look forward to seeing you there!
Thank you to our sponsor
