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
Please welcome new Texas rep, Dee Hawkins!
I think it's important to give back and hopefully as a Texas Rep. for GIST I'll be able to help others. When [...]
Social Security’s Compassionate Allowances explained
The United States Social Security Administration (SSA) pays disability benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability. While some programs give money to people with partial disability or short-term disability, Social Security does not.
Pediatric GISTer Will Test His Mettle in Marine Corps Marathon
One of those things is to run a marathon. At the Battle of Marathon, the legend of the runner Pheidippides was born, as his running from Marathon to Athens declaring "We are victorious" and dying of exhaustion immediately. It was hailed as the farthest a man could run before he died.
LRG Launches Mutational & Plasma Level Testing Survey Project
Recently, the Life Raft Group began work on a survey project sponsored by Novartis Pharmaceuticals designed to assess knowledge and practices among patients and physicians regarding mutational analysis and plasma level testing.
TDM extends BLT deadline: LRG urges GISTers to take advantage
Many of us have been lucky enough to have reached a plateau of successful treatment, and in reaching this level, we may have become complacent about our care; but it is important to be proactive to ensure that we are receiving proper treatment.
Furthering research through the NIH Pediatric GIST clinic
From June 15 through June 17, 2011, the National Institutes of Health (NIH) hosted the seventh annual Pediatric and wildtype GIST Clinic. Ten patients from across the United States and Canada attended, accompanied by family members or friends. In total, 80 patients have participated in the NIH Pediatric GIST Clinic, 75 of whom have wildtype GIST. Thirty-five percent of patients have pediatric GIST, currently defined as diagnosis before the age of 19.
ASCO 2011 Overview
This year’s American Society of Clinical Oncology conference (ASCO), held in Chicago in June, produced a number of interesting and informative GIST-relevant presentations. Below is an overview and we will be posting the rest of the articles very soon.
First GIST tumor board convenes for Latin American docs
Alianza GIST, in partnership with the Life Raft Group, The Max Foundation, and Tecnológico de Monterrey hosted an event for Latin American physicians on Sunday June 5th at the American Society of Clinical Oncology conference (ASCO). The meeting drew physicians from many countries as they discussed best practices in Latin America for GIST and convened a Tumor Board with case discussions.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
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