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
Masitinib, other trials presented at ASCO
Two posters were presented by principal investigators in the Phase 2 and 3 trials of masitinib for the treatment of newly diagnosed GIST patients.
Member’s BBQ raises funds and awareness in Virginia
Life Raft Group member Jason DeLorenzo held his annual “DeLoBQ” fundraiser last month in Alexandria, Virginia. The BBQ has raised almost $2,000 [...]
Times series underscores LRG research team’s approach
The first in a series of New York Times articles by science writer Gina Kolata on new approaches to cancer treatment underscored the type [...]
Agreement in Guatemala to benefit GIST patients
An agreement to secure the entry of Gleevec for Guatemalan GIST and chronic myeloid leukemia patients was reached with the Central American [...]
Alianza GIST joins forces with Brazilian partner
Alianza GIST and Oncoguia have formalized a new partnership to work together to benefit GIST patients in Brazil. The first goal [...]
NIH Clinic shares information on 3 trials
The Clinic is a collaboration between clinicians and researchers to collect data, investigate and develop treatment for Gastrointestinal Stromal Tumor patients who do not have either c-KIT or Platelet -Derived Growth Factor Receptor alpha (PDGFRA) mutations. This includes patients with Carney’s Triad, Carney- Stratakis Dyad, and Wildtype GIST. These tumors frequently stain negatively for a protein called Succinate Dehydrogenase, a condition referred to as being Succinate Dehydrogenasedeficient (SDH-deficient). There are currently three clinical trials in development for this population.
New gene panel takes mutation testing to a new level
A new gene panel takes mutation testing to a new level. The panel tests for mutations in 23 genes at once [...]
A Dutch youth’s global search for other patients with Carney’s Triad
Since he turned 14, Jasper Smit of the Netherlands has been searching for patients like him. This is very difficult because Carney’s Triad is an extremely rare syndrome. Worldwide there are about 30 known patients with a ‘complete’ Carney’s Triad (GISTs, pulmonary chondromas, paragangliomas). Incomplete Carney’s Triad affects less than 100 patients in the world. This means that they have two of the three types of tumor (mostly GISTs and pulmonary chondromas). In his own words, here is Jasper’s story.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
