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
LRG Represented on Panel About Diversity
The National Organization for Rare Disorders (NORD) held a webinar on February 19th, 2021 for NORD member organizations as well as leaders and staff of nonprofits organizations involved in rare diseases including pharma, patients, caregivers, and advocates.
Pandemic Anniversary
Looking back to March 13, 2020, when we said goodbye to our normal work environment, being together, and when our world both personally and professionally changed radically.
It’s Time: The Life Raft Group Biomarker Testing Campaign – Rob Taylor Talks Testing
Understanding the role of mutations and biomarker testing is one of most important things patients must learn. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. This video talks about why it's important.
Night to Fight Cancer Goes Online for 2021
For the past 16 years The Life Raft Group has held its annual fundraising event Night to Fight Cancer hosted by Jerry Cudzil and Matt Knopman in NYC. Sadly, due to the COVID-19 Pandemic we made the hard decision to cancel this fundraising event. Instead we held it online with much success.
LRG Webcast Series: Finding Biomarkers that Cause GIST: From Research to Clinical Application
Dr. Lori Rink, Fox Chase Cancer Center, and Dr. Inga-Marie Schaefer, Brigham & Women’s Hospital, are two researchers who are making discoveries in their respective laboratories to uncover the unique biomarkers in GIST that will be future drug targets.
Calling All GEMs!
Become a GEM today! Help us continue our programs and services for GIST patients by giving a monthly recurring donation. Every little bit helps us to further research and support GIST patients and caregivers.
Heroes of Rare Disease: The 2021 Rare Impact Awards
June 28th Awards Ceremony registration: https://livingrare.org/rare-impact-awards/ Dr. Jason Sicklick, Blueprint Medicines Among Honorees Released 2/23/21 by NORD The National Organization [...]
Cupcake Records Honors Lorie (Skelton) Perry
Lorie (Skelton) Perry was a GIST patient who passed away on November 11th, 2020. She was known to her family for many things. Among them were her warmth, her willingness to help others, and her talents as a baker. Her family wanted to find a way to honor her memory with a fundraiser.
GLOBAL PARTNERS & AFFILIATIONS
