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.
We currently have an online application that everyone can fill out and downloadable forms that patients and caregivers can print and send to us. If you have any questions or difficulties with these forms, please feel free to call us at 973-837-9092, or email us at liferaft@liferaftgroup.org.
Community Benefits:
For patients, caregivers, and their families:
- Membership in a private, secure email community (listserv), maintained by the Association of Online Cancer Resources (ACOR), where you can meet and communicate with other patients and caregivers and share information.
- Access to newsletters which provide the latest information and education about GIST and its treatments.
- Access to webcasts that provide valuable information about GIST care, treatment, and research.
- Membership package sent via mail filled with important information for your GIST care management. GIST management information can also be sent to your doctor, upon request.
- Free personal consultations about GIST management, clinical trial navigation and other areas.*
- Enrollment in a sophisticated GIST Patient Registry, which produces cutting edge research on the latest medical trends among GIST patients.
- An opportunity to participate in the LRG’s GIST Tissue Bank and further the cause of GIST research.
- Connection with other GIST patients and caregivers in your local area through support groups, available both throughout the U.S. and internationally.
For physicians, researchers, and others interested in learning about GIST:
- Access to newsletters which provide the latest information and education about GIST and its treatments.
- Access to webcasts that provide valuable information about GIST care, treatment, and research, including some by members of our LRG Research Team.
- For physicians, an opportunity to be listed in our directory of GIST Specialists.
- For researchers, an opportunity to work with the LRG’s Tissue Bank, which is tied to our Patient Registry of clinical histories, and is the largest of its kind worldwide.
If you have any problems sending us your application, or have any questions, please e-mail us at liferaft@liferaftgroup.org or call us at (973) 837-9092.
Privacy
Our primary concern is the privacy of our members. The LRG does not send information that might be considered private to anyone outside of the group. To help ensure that goal, we restrict membership in our e-mail listserv community to GIST survivors and caregivers.
Disclaimer
*We are patients and caregivers, not doctors. Any information shared among the group should be used with caution, and is not a substitute for careful discussion with your doctor.
Please let us know if you have any questions or comments. We look forward to hearing from you and will let you know as soon as possible if your membership is delayed (Note: Reasons for delay might include: identifying information and diagnosis details are missing from application).
