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
Partnership for Survival – Treating the Rarest of the Rare
Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.
Patient of the Month for February: Richard Schoenbohm
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Richard Schoenbohm shares his story.
Priority Review Granted for Ripretinib
Deciphera Pharmaceuticals announced today that the U.S. Food and Drug Administration (FDA) has accepted their New Drug Application (NDA) for ripretinib for Priority Review. Ripretinib is an investigational broad-spectrum KIT and PDGFRa inhibitor for the treatment of patients with gastrointestinal stromal tumors (GIST).
NCI Mentions LRG as Component in Development of Ayvakit
In a new article from the NCI concerning the January 2020 approval of Ayvakit, (produced by Blueprint Medicines) the Life Raft Group is acknowledged in the section, “Capturing the Patient Experience.” We are proud to have played a role in supporting the research involved in bringing a new treatment to market for GIST patients.
Patient Advocate’s Story Unfolds in RARE Revolution Magazine
Deb Melikian, patient advocate, and Dr. Jason Sicklick, GIST expert & researcher, share the story of their unique partnership which began at an LRG GIST Day of Learning in the rare partners issue of RARE Revolution Magazine.
Patient of the Month for January: Juan Castelan
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Juan Castelan shares his story.
Breaking News for GIST Patients – Avapritinib Approved!
Blueprint Medicines announced that the FDA has approved AYVAKIT™ (avapritinib) for the treatment of adults with unresectable or metastatic gastrointestinal stromal tumor (GIST) harboring a platelet-derived growth factor receptor alpha (PDGFRA) exon 18 mutation, including PDGFRA D842V mutations.
CTOS 2019 Highlights
CTOS, "The Connective Tissue Oncology Society", is an organization of medical specialists and researchers who specialize in bone and soft tissue tumors. They hold a meeting every year to discuss the latest innovations in this area. This year the meeting took place in Tokyo from November 13 until 16.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
