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 LRG and NIH Collaborate on Virtual Tumor Boards to Review Challenging Cases
In this issue of LRG Science, we highlight the power of collaboration in medicine with a recap of the Virtual Tumor Board co-hosted with the NIH. Due to the pandemic, The Life Raft Group was asked to organize a Virtual Tumor Board to assure that challenging cases were presented in order to help the patients and their treating physicians develop an effective treatment plan.
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.
Experiencing the Rare Disease World through the NORD Summit
Web Associate Eddie Delgado shares his impressions of the Rare Disease Summit held virtually by NORD earlier in the month.
Annual Report 2019
Our theme for 2019 was Travel with Us on the Path to Survival. GIST patients and caregivers are on a journey, seeking to survive this rare cancer. Our mission is to walk with them on their journey, providing resources to help them not only survive, but thrive. In 2019, there was a strong research component to our efforts, promoting the importance of real world data and real world evidence to enhance traditional research
Women in Sarcoma Program 2020
The Life Raft Group has developed the Women in Sarcoma program in recognition of the many women sarcoma specialists that engage with our organization and our patient and caregiver community.
Dr. Gina D’Amato Discusses Liquid Biopsy
Dr. Gina D'Amato, who appeared recently as moderator and contributor for the first Women in Sarcoma discussion panel, recorded a video discussing the use of liquid biopsy in sarcoma on OncTV for OncLive.
Pruebas genéticas costo efectivas para GIST recién diagnosticados
En un artículo publicado el 29 de septiembre de 2020 en la revista “JAMA Network Open”, Dr. Jason Sicklick, Moores Cancer Center, UCSD y sus colegas informaron que las pruebas genéticas son costo efectivas y beneficiosas para los pacientes recién diagnosticados con GIST metastásico.
The LRG and NIH Collaborate on Virtual Tumor Boards to Review Challenging Cases
In this issue of LRG Science, we highlight the power of collaboration in medicine with a recap of the Virtual Tumor Board co-hosted with the NIH. Due to the pandemic, The Life Raft Group was asked to organize a Virtual Tumor Board to assure that challenging cases were presented in order to help the patients and their treating physicians develop an effective treatment plan.
Patient of the Month for October: William Wenzel
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. William Wenzel shares his story.
GLOBAL PARTNERS
