Neurofibromatosis Support Group

There are studies out there that will pay for the costs to remove such tumors. I came across this study on the NF inc website...

“Genetic & Molecular Studies of F1”
Massachusetts General Hospital, Boston, Massachusetts
James Gusella, Ph.D. at (617) 724-2365
e-mail: mcoleary@partners.org

Individuals of all ages with NF1 and NF-like disorders may participate in a genetic research
study to find genes that influence disease severity and progression. The lab is particularly
interested in individuals who (a) have unusual or rare disease features or (b) have very high or
very low numbers of skin neurofibromas for their age or (c) plan to have surgical removal of NF related
tumor(s). Taking part in the study involves a one-time blood draw; review of your
medical and family histories, and donation of excess tissue from any NF-related surgeries. The
study is voluntary and requires less than one hour of your time. Travel to Massachusetts
General Hospital is not required, and all costs associated with the blood draw and collection of
tissue from surgery will be reimbursed. For more information, contact Melanie O’Leary, M.S. at
1-800-956-6759.

Actually, the reimbursement from that study means you won't be charged for the collection part of the process. They won't pay for the actual surgery cost.

There are fees involved if someone lets say has a tumor removed and wants to have it examined by a pathologist states away and getting it 'prepped' would incur costs. As the case would be if someone decides to donate tissue and have their surgery not at MGH.