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
Resources on Pregnancy & GIST
In our LRG community, we’ve seen many examples of GISTer family planning but also women who have found out they had GIST while they were pregnant. Here are some helpful resources
The LRG Welcomes Young Jae Kim as Our Newest Liaison
The Life Raft Group is pleased to welcome Mr. Young Jae Kim (YJ) as the new LRG representative (liaison) in our global network!
Patient Advocacy in Brazil – Instituto Oncoguia
Luciana Holtz de Camargo Barros, founder and president of Instituto Oncoguia, authored this article about the creation and advocacy issues of this cancer patient advocacy organization based in São Paulo, Brazil.
April Stephens, Long-Term Survivor
The average GIST patient is in their 50s or older when diagnosed with GIST. The rare exception is usually a pediatric SDH- deficient GIST, but April’s case is a case of ‘the rarest of the rare’ in that she was only 20 years old when she first encountered GIST and was not SDH-deficient.
GIST Expert Dr. Jason Sicklick & Team Release New Study on What Drives GIST
In a recent study, researchers at University of California San Diego School of Medicine identified new therapeutic targets that could lead to new treatment options for patients. The study, published in the February 18, 2021 online edition of Oncogene, found that specific cell-to-cell communication influences GIST biology and is strongly associated with cancer progression and metastasis.
LRG Webcast Series: hPPGL Syndrome – a Misnomer with Consequences
Dr. Annes reviewed the hPPGL Syndrome with particular focus on the underlying genetics basis and related tumor risks.
It’s Time: The Life Raft Group Biomarker Testing Campaign – MaKayla Evans Talks Testing
Understanding the role of mutations and biomarker testing is one of most important things patients must learn. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. This video talks about why it's important.
Caregiver of the Month for February: Bonita Morgan
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Bonita Morgan shares her story.
GLOBAL PARTNERS & AFFILIATIONS
