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.
Update your Patient Registry Info.
Join The Life Raft Group.
Current GIST Clinical Trials.
Search the GIST Specialist Database.
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
Salud con Datos Produces Unique Analysis of Chilean & Mexican Patient Registries
This study is the result of a collaborative effort between Chile and Mexico, called Salud con Datos that sought to determine GIST prevalence, patients’ clinical characteristics and survival rates. Our report is the largest of its kind in Latin America.
NCCN Guidelines for GIST for Patients
The LRG has been granted permission from the NCCN to share the most recent NCCN Guidelines for Patients® with soft tissue sarcoma, most specifically the section on GIST, which the LRG has endorsed.
Dr. Gina D’Amato, GIST Specialist, Talks Advances in Sarcoma
In a recent post by Oncology Nursing News, Dr. Gina D'Amato, associate professor and assistant director of Clinical Research at Sylvester Comprehensive Cancer Center, University of Miami Health System, discusses the evolution of treatment in sarcoma, the use of NGS, and predictive and prognostic biomarkers under investigation in the space.
Blueprint Medicines Presents Cost of Testing Poster
Blueprint Medicines presented a poster titled “The Cost Impact of Increased Molecular Testing Rates for the Treatment of Patients with Gastrointestinal Stromal Tumors” at the annual meeting of the AMCP.
Science Forum Convened to Better Understand the State of GIST Research
As research regarding GIST and other relevant topics is extensive and dynamic, consensus among the Real World Evidence Team was that it would be a good idea to convene a group tasked with monitoring and assessing this research. Recently the LRG held its inaugural virtual meeting of the newly formed LRG Science Forum.
When Your Mind Wanders
We often hear our patients and caregivers say they are struggling with anxiety due to a GIST diagnosis. This anxiety can put a damper on everyday life. Here are ten tips to stay in the moment when your thoughts wander.
Marlene Nei – Volunteer, Advocate, and Caregiver
Marlene has been a member of the Life Raft Group since 2011. Marlene has a long history of volunteerism for which she credits her mother who modeled helping anyone and everyone.
Hope & Obstacles Along a GIST Journey
Many GIST patients around the world struggle with getting the treatment they need to survive and thrive. Arun Krishnan’s story illustrates how collaboration between patient groups and doctors across the globe can affect patient survival.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
