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
Rare Diagnosis Fosters a Passion for Biomarker Testing & Self-Advocacy
GISTer Bill Borwegan shares his inspiring GIST journey illustrating the importance of biomarker/ mutational testing and self-advocacy as a rare disease patient.
It’s Time: The Life Raft Group Biomarker Testing Campaign – Identify Subsets & Clinical Trials
Identifying rare subsets of GIST and starting new clinical trials is critical. Read here about one researcher's clinical trial progress.
Caregiver of the Month for June: Sherry Codner
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Sherry Codner shares her story.
It’s Time: The Life Raft Group Biomarker Testing Campaign – Standard of Care
If you know your mutation, you have a better chance of getting the most effective treatment more quickly, and increasing your survival time. Making biomarker testing a standard of care will ensure that patients & medical professionals are fully informed so that treatment will be more effective.
GIST Awareness Day 2021
Despite all the work done by our amazing members and friends to date there is still a huge lack of education [...]
It’s Time: The Life Raft Group Biomarker Testing Campaign – Advocate for this Lifesaving Tool
Uncovering the driving force behind each individual’s tumors is not just important, it is critical. In this post, we feature sarcoma experts discussing biomarker testing.
New Horizons GIST Presents Webinar on Mutational Testing for Global Community
This New Horizons GIST webinar is for GIST patients around the world. Hosted by SPAEN, this presentation focuses on mutational testing as a guide for the right therapy.
It’s Time: The Life Raft Group Biomarker Testing Campaign – Educating & Informing Payers
It's Time! Biomarker testing leads to an accurate diagnosis, avoiding the expense of unnecessary, expensive treatments. Biomarker testing leads to an accurate diagnosis, avoiding the expense of unnecessary, expensive treatments.
GLOBAL PARTNERS & AFFILIATIONS
