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
Trent and Rosenberg of Sylvester Cancer Co-author Sarcoma Book with Other Experts in the Field
Dr. Jonathan Trent, GIST Specialist at Sylvester Cancer Center and Dr. Andrew Rosenberg, also a GIST Specialist at Sylvester, have co-authored a book dedicated to sarcoma diagnosis and management with other sarcoma experts specifically for the purpose of giving oncologists a credible authority to 'go-to' for sarcoma knowledge.
GIST Knows No Boundaries
On September 17, 2020, the Life Raft Group invited Dr. David Josephy, President of GIST Sarcoma Life Raft Group Canada, to present his highly acclaimed GIST 101: GIST Biology, Genetics and Pathology - an overview of the biology, genetics and pathology of GIST - for the members of Henzo Kenya, a patient advocacy group for GIST and CML patients in Kenya, Africa.
“LEY DE CÁNCER CLAUDIO MORA”
On Wednesday, August 26, 2020, LRG Global Consultant & Executive Director of Fundación GIST Chile, Piga Fernández, (GIST survivor & advocate), attended ae climatic event at Palacio de La Moneda (La Moneda), where the President Piñera of Chile took the final steps to sign the 'Ley de Cáncer Claudio Mora' guaranteeing healthcare protections for Chilean cancer patients.
Caregiver of the Month for September: Pat Rocco
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Pat Rocco shares her story.
New Horizons GIST 2020
The New Horizons GIST 2020 Virtual Meeting kicked off on Thursday September 10th at 8am EST. Meeting since 2003, these patient advocates for various cancers split off to a GIST-only meeting several years ago. This year’s meeting, originally planned for Berlin, Germany, was held virtually September 10-12th.
LRG Hosts Virtual Meeting for Global GIST Advocates
On Friday, August 21, The Life Raft Group hosted a virtual meeting entitled “GIST Patient Advocacy during the 'New Normal' of the COVID 19 Pandemic.” Designed for representatives from global GIST advocacy organizations, its purpose was to provide a forum for the international community to discuss challenges they are facing, and to share experiences and best practices.
Virtual Life Fest 2020: SDH Panel Summary
Over fifty participants attended a virtual meeting of SDH Experts in honor of GIST Awareness Day, July 13th, during Virtual Life Fest 2020. Questions were presented to the panel which included One of the first questions asked was “what specifically are your most challenging research hurdles and how can we, as patients and patient advocates from around the world help move research forward?”
Patient of the Month for August: Julie Durkee
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Julie Durkee shares her story.
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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