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
Anxiety in the Time of Crisis
These are trying times for everyone. As we move into uncharted territory created by the coronavirus pandemic, it is normal for the average person to experience fearful thoughts. Add to the mix fears that are ever present for those with a cancer diagnosis and you have a formula for anxiety.
News Concerning the Coronavirus
The Life Raft Group is facing the same challenges we all are in light of this health crisis. We are doing our best on a daily basis to do the right thing in all matters impacting the well-being of our patients, caregivers, staff and everyone we serve.
Patient of the Month for March: Alan Henderson
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Alan Henderson shares his story.
Drug Repository Programs: A Creative Solution
Drug repository programs have the potential to be a key component in accessing life-saving treatments. In a landscape where prices for cancer drugs are escalating, many face a challenge in obtaining life-saving treatments. There are many resources for overcoming these obstacles, but it is clearly not enough for those already struggling with the challenges of a cancer diagnosis.
The State of GIST Treatments
Senior Scientific Director Pete Knox reports on current and emerging GIST treatments and the mutations they address. New research in GIST is happening, and there may be even more therapies around the corner.
Passion Translates to Advocacy Across the Globe
When facing a diagnosis of cancer, self-advocacy becomes an important survival skill for patients and caregivers. These stories illustrate what an ordinary person can accomplish due to extraordinary circumstances and how they affected change for so many people with GIST.
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.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
