NIH & LRG Collaborate for Virtual GIST Tumor Board
It is with great enthusiasm that The Life Raft Group announces a continued collaboration with the National Institutes of Health (NIH) to host the NIH Pediatric & Wildtype GIST Clinic. This Clinic traditionally takes place face-to-face in Bethesda, Maryland. Normally, experts from around the country travel to the NIH to review wildtype GIST cases and speak with families about their special cases.
However due to the Covid-19 pandemic in 2020, the LRG offered two virtual GIST tumor boards in place of the usual NIH Clinic. These tumor boards were extremely successful as each patient’s physicians presented their cases to the Pediatric & SDH-Deficient GIST Consortium, which is comprised of GIST experts from around the world. Recommendations were made to the patients’ physicians and follow-ups were conducted with the patients and families with a summary of the discussion that took place.
Dr. Jason Sicklick of Moores Cancer Center, UCSD, said of the 2020 Virtual GIST Tumor Board:
“Caring for rare diseases like GIST is a team sport. The Life Raft Group Virtual Tumor Board is an excellent way to gather experts from around world to help manage the toughest of the tough cases of GIST.”
April Lopossa, a young woman who was diagnosed with GIST during her pregnancy, says this about her doctor presenting her case for review at the Virtual Tumor Board in 2020:
“When I was diagnosed with GIST I wasn’t sure what to expect. My oncologist suggested putting my case in front of the Virtual Tumor Boards because I was in my second trimester of pregnancy. I said yes because I wanted to know all of the options I had in regards to treatment, while making sure my daughter was safe. Having the options in front of me with the backing of so many specialists helped me feel more confident in the decision I was making when it came to treating my GIST!”
Unfortunately, in 2021 the pandemic continues to delay an in-person Clinic and the NIH is once again collaborating with the LRG present the Virtual GIST Tumor Boards this summer. The LRG would like to offer this opportunity to pediatric and wildtype GIST patients to have their cases reviewed.
Interested in having your case reviewed?
If you are interested in presenting your patient’s case to the Virtual Tumor Board, or joining our panel as a GIST expert, please email Sara Rothschild at firstname.lastname@example.org or call 973-687-1059.
If you are a GIST patient, and in our LRG Patient Registry and would like your case reviewed by a team of experts in a future Virtual GIST Tumor Board, you can email Sara Rothschild at email@example.com, call 973-687-1059 or fill out the form below for consideration.
If you are not currently a member of the Life Raft Group Patient Registry, please fill out this form: