The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts.
Other Programs Supported by The Life Raft Group:
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 GIST 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.
Bella Rocco
Diagnosed in 2009 with Pediatric
(SDH-deficient) GIST.
HELP US SAVE LIVES
The Life Raft Group is a community and it is up to all of us to make a difference. There are many ways to help. We always need patient tissue and data in our GIST patient registry. Volunteering your time or making a monetary donation also helps us drive research forward and save lives.
News
Life Raft Group Collaborates on White Paper Published by Cancer Leaders
The Life Raft Group has been an integral part of a pan-cancer Working Group designed to determine consistent terminology around biomarker or mutational testing. The goal is to communicate to patients and the larger community in plain, patient friendly and consistent language what these terms mean, and how they impact on precision medicine.
Blueprint Medicines Announces Publication in The Lancet Oncology
Blueprint Medicines Announces Publication in The Lancet Oncology Showing Durable Clinical Benefits of AYVAKIT™ (avapritinib) in NAVIGATOR Trial Patients with PDGFRA D842V Mutant GIST.
Help Us Celebrate GIST Awareness Day with #GISTHope
For GIST Awareness Day, to celebrate our theme of #GISTHope, we’re asking you to spread the word about GIST on social media and out in the world.
Heroes on the Frontline: Dr. Jonathan Trent
The LRG was fortunate to get a few minutes with GIST specialist, Jonathan Trent, MD, Sylvester Comprehensive Cancer Center, who shared his experience with his patients over the past few months during the coronavirus pandemic.
Heroes on the Frontline: Eric Lindberg
Eric Lindberg, diagnosed with GIST in 2017, works as an emergency room nurse and has been on the frontlines throughout the COVID-19 pandemic.
Heroes on the Frontline: Dr. Matthew Lurin
Q&A with a LRG Major Donor & Fundraiser
Long-Term Survivor Stories – Chuck Korte & Dina Wiley
For GIST patients, long term survival is the ultimate goal. A number of factors may influence long term survival – some of these are demographic and clinical, like mutational subtype and genetic factors. However, there are a number of others that are perhaps more subtle, such as lifestyle, attitude, and access to treatment, experts, and advice.
Making the Right Decisions in Tough Times
Amelia Yeo, LRG Country Liaison for Singapore and GIST caregiver, describes how she and her husband are doing during this global health pandemic.
GLOBAL PARTNERS & AFFILIATIONS
