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
State of the GIST Community Part 2: What do we know about your diagnosis?
One of the most common questions GIST patients ask of the Life Raft Group is how many cases of GIST out there [...]
Healthcare 2011 and beyond: Part 2
Medicaid is a state-run program that helps pay medical costs for some people with limited income and resources and meet other eligibility requirements. Medicaid also offers benefits not normally covered by Medicare, like help with personal care and rides to doctor appointments. If you qualify for Medicaid in your state, you automatically qualify to get Extra Help paying for Medicare prescription drug coverage.
Fletcher Science Lab – Behind the walls of Brigham & Women’s
Go inside the Fletcher Science Lab at Brigham & Women's with David Josephy and Dr. Jonathan Fletcher. David Josephy is the President [...]
Dating with GIST: the who, what, when and just plain how? (Part 2)
The perilous world of dating can become even more complicated when you are living with cancer. This article is the second in a two part series on dating with a diagnosis of GIST. Part one, which was published in the February 2011 issue of the LRG newsletter featured experiences from three GIST survivors, Jason DeLorenzo, Eric Tan & Estelle Lecointe on the difficulties approaching the subject of GIST while dating. Part two covers tips on approaching the subject, a success story and new ways to meet people.
Breaking News Update: TDM renews plasma testing
On April 21, 2010, the U.S. Food and Drug Administration (FDA) issued a warning letter to Novartis criticizing its promotion of blood level testing on its CML and GIST Alliance websites. As of September 30, 2010, Novartis terminated the CML and GIST Alliance programs which it had contracted with TDM Pharmaceutical Research, LLC. Since then, the Life Raft Group has been working tirelessly behind the scenes to try and resume this critical testing procedure as it has important potential for managing GIST patient care.
State of the GIST community: Life Raft Group’s patient registry demographics
As of December 31, 2010 the Life Raft Group’s Patient Registry has now accounted for 1,279 cases of GIST. The members of this registry have reported their clinical information to us as it pertains to their treatment of GIST. Of these 1,279 cases, we are here to report some key demographics that will help you understand who is a part of Life Raft Group GIST Community.
6th NIH GIST clinic once again succesful
“I learned a lot and feel so much better having the NIH team as an additional resource, “said LRG member, Anne Pacifico.
National Organization for Rare Disorders Hosts Forum for FDA Commissioner and Patient Leaders
Food and Drug Commissioner Dr. Margaret Hamburg today conducted an unusual one-on-one dialogue with leaders of approximately 60 patient organizations at a forum hosted by the National Organization for Rare Disorders (NORD).
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
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