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
Finding a Ride to Your Doctor’s Appointments
Over 3.6 million people miss their medical appointments each year, preventing them from getting the care that they need or getting access to the medicine that could help them. People report that distance to the doctor’s office, cost of the transportation, and access to a driver or public transportation as the main reasons that they are having a challenge with transport.
Increasing the Quality and Efficiency of Clinical Trials
The mission of the Clinical Trials Transformation Initiative (CTTI) is to develop and drive the adoption of practices that will increase the quality and efficiency of clinical trials.
News from the 17th NIH Pediatric and Wildtype GIST Clinic
The NIH Pediatric and Wildtype GIST Clinic is a collaboration amongst researchers, specialists, patient advocates, patients and family members, with the goal of furthering the knowledge of SDH-deficient gastrointestinal stromal tumors (GIST) in order to develop more effective therapies.
Health Decisions Tour in Latin America
Collaboration among patient groups and working together in setting common goals is vital. Together we can have a stronger voice to achieve our participation in the decision-making on health issues.
LRG Data Leads to Change
The College of American Pathologists (CAP) released an updated version of its GIST Biopsy and Resection Cancer Protocols. Pathologists use CAP Cancer Protocols in the process of diagnosing a disease.
A ‘Clinical Trial of One’
October's LRG newsletter features artist Douglas Morgan, who found himself with a rare GIST mutation and no treatment options until an innovative oncologist and a compassionate gesture by a pharmaceutical company gave him a chance to receive a unique treatment.
Partnering with Selnet
The Life Raft Group is pleased to announce a new partnership with SELNET, a project which is creating a multidisciplinary network of European and Latin American clinical and translational specialists. This project’s goal is to improve diagnosis and clinical care in sarcomas and establish guidelines for referral policies, diagnostic methods, clinical practice guidelines among other necessary changes to current practices.
Collaborating with the NCCN FOUNDATION
The NCCN Foundation produces patient booklets that contain evidence-based disease information and important guidance to help patients formulate questions that are important to them. The Life Raft Group, a leading patient advocacy organization, is working with the Foundation to endorse these guidelines.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
