Plexiform Drug Trial
If you have Type 1 Neurofibromatosis with Plexiform Neurofibromas you may be interested in NF1 Plexiform treatment studies for children and adults being developed by Riley Hospital Physicians and researchers in partnership with Indiana University School of Medicine physicians and researchers. For more information about these studies and to see if you qualify, please contact Cindy Dwight, RN 317-274-4928.
I have just come across this info. I am sitting here suffering with the post surgical pain for the last 5 months and am hoping there is something other than surgery. I have several more in my leg and they will eventually become troublesome. I am being treated by the neurosurgery team at Edward Hines V.A. Hospital. Send along any info you possibly can. Thanks!
James, please email us at with your address if you’d like us to mail you information.