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.
GIST Knows No Boundaries
On September 17, 2020, the Life Raft Group invited Dr. David Josephy, President of GIST Sarcoma Life Raft Group Canada, to present his highly acclaimed GIST 101: GIST Biology, Genetics and Pathology - an overview of the biology, genetics and pathology of GIST - for the members of Henzo Kenya, a patient advocacy group for GIST and CML patients in Kenya, Africa.
“LEY DE CÁNCER CLAUDIO MORA”
On Wednesday, August 26, 2020, LRG Global Consultant & Executive Director of Fundación GIST Chile, Piga Fernández, (GIST survivor & advocate), attended ae climatic event at Palacio de La Moneda (La Moneda), where the President Piñera of Chile took the final steps to sign the 'Ley de Cáncer Claudio Mora' guaranteeing healthcare protections for Chilean cancer patients.
Caregiver of the Month for September: Pat Rocco
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Pat Rocco shares her story.
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.
GLOBAL PARTNERS
