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.
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.
LRG Receives COVID-19 Rapid Response Seed Grants from NORD
The National Organization for Rare Diseases (NORD) has awarded 19 seed grants to non-profit organizations that have been adversely affected by the COVID-19 pandemic. The pandemic has created a financial crisis for non-profits due to the cancellation of large events, particularly fundraisers upon which these organizations depend.
COVID-19 – Resources GIST Patients Need
COVID-19 - Resources GIST Patients Need - Please know that the Life Raft Group is here to support you during this Coronavirus crisis. We will continue our daily services during this time and we will be distributing information and messages of hope through all our communication channels.
GIST Awareness Day 2020 – Kenya
Henzo Kenya celebrated GIST Awareness Day all week, July 12th to 17th, by sharing information about GIST and giving messages of hope.
Caregiver of the Month for July: Amelia Yeo
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Amelia Yeo shares her story.
GIST Awareness Day 2020 – Spain
Colectivo GIST Espańa celebró el Día de Concienciación de GIST (GIST Awareness Day) con una publicación sobre el tema. A [...]
GIST Awareness Day 2020 – Colombia
Fundación GIST Colombia & Fundación SIMMON & AlianzaGIST promoted awareness about gastrointestinal stromal tumors [...]
GLOBAL PARTNERS
