The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts.
Other Programs Supported by The Life Raft Group:
PATIENT
Leverage patient perspective to drive innovative solutions in cancer research.
POWERED
Educate and empower patients to take a larger role in their care.
SCIENCE
Accelerate research outcomes through collaborative efforts.
FOR LIFE
Increase access to effective treatments worldwide.
Real World Evidence In Action
Traditional models for cancer research have resulted in many breakthrough treatments for patients, but it is not enough. The LRG’s approach to GIST research through real world evidence, relies on timely, accurate data from the patient’s perspective, with patient survival as the primary objective.
RECENT LRG DATA
Did you know that GIST is actually a family of cancers? Learn more about the science of GIST.
Dr. Monica Anderson
Diagnosed in 2012 with Adult GIST.
Bella Rocco
Diagnosed in 2009 with Pediatric
(SDH-deficient) GIST.
HELP US SAVE LIVES
The Life Raft Group is a community and it is up to all of us to make a difference. There are many ways to help. We always need patient tissue and data in our GIST patient registry. Volunteering your time or making a monetary donation also helps us drive research forward and save lives.
News
The Annual ASCO Conference for Oncology
Conferences like #ASCO25 are more than just annual gatherings for the cancer research community—they're a window into what’s next. For the LRG, they are also a powerful platform to ensure that the GIST patient voice is not just heard, but actively shaping the direction of research.
Caregiver of the Month – May 2025: Joyce Holthaus
Every story is unique, reflecting the strength of those caring for loved ones with GIST. Joyce Holthaus shares her GIST story.
Patient of the Month – April 2025: Jimit Mody
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Jimit Mody shares his story.
Understanding Genomic Testing and SDH-Deficiency in Gastrointestinal Stromal Tumors (GISTs)
Understand why genetic testing is crucial for identifying and managing SDH-deficient GISTs, a rare and often hereditary tumor that requires specialized care.
LRG Advocacy in Action
The Life Raft Group's advocacy during Rare Disease Week secured vital NIH funding for GIST and rare disease research.
GIST Summit 2025 & GIST Day of Learning & a Rodeo
Who knew that the weekend we planned to attend the GIST Summit and GIST Day of Learning in Houston would be [...]
GIST Summit 2025/GDOL Texas Presentations & Photo Gallery
GIST Summit 2025/GDOL Texas was held at MD Anderson Cancer Center and presentations and photo gallery are now available.
The Power of Advocacy
Patient Advocate Diane Albrecht details how she successfully appealed insurance denials for GIST monitoring with persistence and guidance from The Life Raft Group.
GLOBAL PARTNERS & AFFILIATIONS
