The Life Raft Group is a community open to GIST patients, their caregivers and family members, and also to physicians, researchers, and others interested in learning more about GIST and helping those with the disease. We are most interested in coming together to share medical experiences and providing each other with support, and the tools to guide you through your GIST journey. Most importantly, we are here to ensure that no one faces GIST alone. Joining our community is free, and provides a number of benefits, many of which are outlined below.
The LRG hosts many events each year that gather patients with rare GIST sub-types such as those with SDH-deficient GIST. By joining the LRG, you can be informed about future events to learn more.
GIST Support International set up an email listserv dedicated specifically to GIST patients who have no KIT/PDGFRA mutation. Patients can be of any age and family and friends may join as well.
SDH-RA set up a private Facebook group to provide information and support for patients and their families with SDH-related tumors.