The LRG has a simple focus: to cure a form of cancer — gastrointestinal stromal tumors (GIST) — and to help those living with it until then. To do this, the Life Raft Group focuses on three key areas: research, patient support & education, and advocacy, which lay the foundation of our mission to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment.
The LRG Story:
The Life Raft Group (LRG) started in 2000, when a handful of patients in the early Gleevec trials began sharing their experiences online. Many patients had been misdiagnosed with leiomyosarcoma and were just now finding out they had an entirely different cancer – gastrointestinal stromal tumor, or GIST. Sharing their stories and experiences online helped them in a variety of ways, including gaining much-needed support while facing a rare disease and managing the side-effects of a new drug. In the next two years, this group formed a newsletter and Web site to share information with an even wider audience, before formally incorporating in June 2002. In the last 10 years, the Life Raft Group has grown immensely, meeting the challenges facing GIST patients and caregivers and the research community every step of the way.