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.
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
Annual NORD Breakthrough Summit Tackles a Diversity of Rare Disease Issues
I was fortunate to be able attend the @NationalOrganizationforRareDisorders Rare Diseases + Orphan Products Breakthrough Summit (#NORDSummit) on October [...]
Jess Ly Runs for the Cause – A Half Marathon for the LRG & GIST Awareness
During the pandemic and in September 2020, Jess Ly was diagnosed with GIST cancer. The Life Raft Group (LRG) community, her GIST friends, and the cancer community welcomed her with open arms. Now she's running a half marathon to raise awareness and funds for #GISTresearch!
GIST Specialist Dr. Neeta Somaiah Shares on Life as a Sarcoma Expert
LRG Medical Advisory Board Member and GIST Specialist Dr. Neeta Somaiah shares on her life as a sarcoma specialist.
Time To Tell The Stories – Donald Prestage
The Life Raft Group is celebrating our 20th anniversary as a nonprofit in 2022. Our Time to Tell the Stories features honor this legacy. GISTer Donald Prestage shares his story.
New Private Facebook Discussion Groups
The Life Raft Group is launching two new private Facebook Support Groups for patients and their caregivers. These two groups are [...]
Global Advocacy News – SIMPOSIO ONCOLATINO
PIGA FERNÁNDEZ, LRG GLOBAL CONSULTANT, GLOBAL GIST DIR., EXEC. DIRECTOR FUNDACIÓN GIST CHILE I was invited to participate in [...]
Collaborative Effort Produces Position Paper on Need for Advanced Biomarker Testing
The Life Raft Group was recently part of team of authors on a collaborative position paper entitled 'Undetected KIT and PDGFRA mutations: an under-recognised cause of gastrointestinal stromal tumours (GISTs) incorrectly classified as wild-type published' in Pathology: The Journal of the Royal College of Pathologists of Australia.
Let the Buyer Beware: Challenges with Online Pharmacies
Recent articles have shed light on an issue of concern about counterfeits for patients who take imatinib myselate as part of their treatment for GIST.
GLOBAL PARTNERS & AFFILIATIONS
