Our mission is to enhance the survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts.
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 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.
Marc Wasserman
Diagnosed in 2006 with Adult GIST.
Bella Rocco
Diagnosed in 2009 with Pediatric
(SDH-Deficient) GIST.
The Importance of Biomarker Testing for the Effective Treatment of GIST Patients – LRG Science
This issue of LRG Science presents six case studies as evidence that the practice of biomarker/mutational testing early in a GIST patient's journey is a critical path to the most effective treatment. Each patient was diagnosed with GIST, but did not receive mutational testing early enough to avoid suffering adverse side effects and wasting money on unnecessary, costly drugs.
Partnership for Survival – Treating the Rarest of the Rare
Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.
New Research Lab Dedicated to GISTer
Dr. Jason Sicklick of Moores Cancer Center at UC San Diego dedicated his new research lab to the memory of GISTer Merak Melikian Hatounian.
October 2nd GIST DO IT Walk NJ Postponed
The welfare of our members and staff is of utmost importance to us and due to ongoing pandemic, we have decided to take the precaution of postponing our GIST DO IT Walk which was scheduled for October 2nd.
Thank You to Our Newest GEM!
Our GEM Donor Program has a group of new donors that will help the LRG continue the work we do with patients and #GISTresearch. Our thanks go out to our newest GEM!
New Study Aids in the Diagnosis of Hereditary Paraganglioma and Pheochromocytoma
A recent study in Cancer Genetics, International initiative for a curated SDHB variant database improving the diagnosis of hereditary paraganglioma and pheochromocytoma, is important for GIST patients who carry a germline SDHB mutation
Australian GIST Advocates Overcome Payer Obstacles Concerning Qinlock
Australian GIST Advocates Overcome Payer Obstacles Concerning Qinlock. 4th line drug approval was approved! GISTer Sarah McGoram shares the news.
Patient of the Month for September: Martha ‘Marty’ Hunt
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Martha Hunt shares her story.
The Importance of Biomarker Testing for the Effective Treatment of GIST Patients – LRG Science
This issue of LRG Science presents six case studies as evidence that the practice of biomarker/mutational testing early in a GIST patient's journey is a critical path to the most effective treatment. Each patient was diagnosed with GIST, but did not receive mutational testing early enough to avoid suffering adverse side effects and wasting money on unnecessary, costly drugs.
GLOBAL PARTNERS
