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.
Survival in Advanced GIST Has Improved Over Time – LRG Science
In this issue of LRG Science, the relationship between overall survival (OS) and access to treatments after imatinib failure is explored. In 2019, the LRG published this research in Clinical Sarcoma Research and this issue includes commentary from experts. LRG Science endeavors to be a respected source of timely, science-based information built on real world data designed for those whose focus is to increase patient survival from GIST and other cancers.
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 Horizons GIST 2020
The New Horizons GIST 2020 Virtual Meeting kicked off on Thursday September 10th at 8am EST. Meeting since 2003, these patient advocates for various cancers split off to a GIST-only meeting several years ago. This year’s meeting, originally planned for Berlin, Germany, was held virtually September 10-12th.
LRG Hosts Virtual Meeting for Global GIST Advocates
On Friday, August 21, The Life Raft Group hosted a virtual meeting entitled “GIST Patient Advocacy during the 'New Normal' of the COVID 19 Pandemic.” Designed for representatives from global GIST advocacy organizations, its purpose was to provide a forum for the international community to discuss challenges they are facing, and to share experiences and best practices.
Virtual Life Fest 2020: SDH Panel Summary
Over fifty participants attended a virtual meeting of SDH Experts in honor of GIST Awareness Day, July 13th, during Virtual Life Fest 2020. Questions were presented to the panel which included One of the first questions asked was “what specifically are your most challenging research hurdles and how can we, as patients and patient advocates from around the world help move research forward?”
Patient of the Month for August: Julie Durkee
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Julie Durkee shares her story.
TargetCancer Foundation Announces Rare Cancer Precision Medicine Research Initiative
TargetCancer Foundation (TCF) proudly announced today the initiation of the TCF-001 TRACK (Target Rare Cancer Knowledge) Study, an innovative trial that brings advances in precision medicine to people living with rare cancers and their treating physicians, right in their own communities.
Giving Tag Fundraising Campaign for the LRG by Stop & Shop
With the Giving Tag, shoppers can support the LRG by directing their $1 donation generated from the purchase of the $2.50 Community Bag.
Daily Mental Energy Checklist
Dealing daily with a pandemic along with GIST can be a daunting task and it may feel difficult sometimes to even face a new day. Paying attention to your mental health is an important part of everyday self-care. We have composed a Daily Checklist to help you consciously acknowledge where you are at the beginning of your day, work with those feelings, and reflect on your successes.
GLOBAL PARTNERS
