Organización sin fines de lucro
Última modificación: 25/09/2013 14:52:09
The mission of the Life Raft Group is 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.
To do this, we focus on three key areas: research, patient support & education, and advocacy.
In the area of research, we fund and manage uniquely coordinated research initiatives that always keep the needs of the GIST patient foremost. The Life Raft Group is the only GIST advocacy organization with a dedicated research initiative led by a team of world renowned scientists and clinicians in GIST. Our collaborative initiatives are constantly analyzed to ensure their focus remains on finding a cure for GIST.
The LRG also provides support & education to patients & caregivers living with GIST on an individual basis by providing one-on-one counseling sessions, local in-person meetings, and a biennial meeting that gathers the patient, pharmaceutical & medical professional communities together in a supportive and educational setting. We also offer education to the GIST community at large through our videos & webinars, websites, worldwide GIST specialist database, a one-of-a-kind GIST-specific clinical trials database, newsletters & other materials.
In addition, The LRG is a very active presence in effecting change in the GIST community. Our advocacy role ranges from helping patients with treatment access issues on a one-on-one basis, creating regional groups in underserved areas in order to better inform & empower patients, championing patients' needs before government & policy makers and reporting on trends in dosage and survival to the world.