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
One Perspective on the BLU-285 Trial (avapritinib/Ayvakit)
LRG members Jennifer & Owen Moore give their perspective on participating in the Phase I BLU-285 trial at OSHU with Dr. Michael Heinrich. After three other drug treatment lines and faced with several growing tumors, the BLU-285 (avapritinib) trial was Owen’s best option.
Resources for Your Cancer Journey
Being diagnosed with a rare cancer like GIST can make finding resources more challenging. While this is not an exhaustive list of resources available, these organizations can provide a wealth of information and assistance.
Top Ten Tips for Caregivers
Director of Communications Mary Garland shares these top ten tips for caregivers for this GIST journey.
Spokane GISTers Gather for Food & Sharing Along the Journey
Five GISTers and four caregivers attend the luncheon at Europa Restaurant and Bakery. Besides a great meal, attendees were able to meet each other and share our journeys through their GIST journeys.
Steve Pontell – Newest Board Member
The Life Raft Group announces Steve Pontell, Esq. as the newest addition to our Board of Directors.
Management of Adults with SDH-Deficient GISTs
Dr. Andrew Blakely, Program Director, Surgical Oncology Research Fellowship, National Cancer Institute, National Institutes of Health, shares how his team works with adult SDH-deficient GIST patients.
Building a Network of Rare Specialists
Margo Shoup is a doctor on a mission. She moved from the Chicago area to Connecticut almost a year ago and has been the catalyst behind the creation of specialized disease teams targeting cancer care in a health system that covers an extensive area from western Connecticut up into the Hudson Valley of New York State.
Making New Connections in NJ
Earlier this month, members of the LRG staff were invited to the Rutgers Cancer Institute of New Jersey by sarcoma specialist Dr. Roman Groisberg.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
