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
Patient of the Month for December: Sara Penne
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Sara Penne shares her story.
First LRG GIST Mentor Training Takes Place in Wayne, NJ
An LRG GIST Mentor helps patients and their caregivers through their GIST journey – from receiving a diagnosis to navigating different resources of information, support, treatment options, side effects, etc.
GIST Support UK & PAWS-GIST News!
The UK National Cancer Research Institute’s (NCRI) annual conference was held on November 3rd-5th. This year the conference was held in Glasgow (Scotland).
The LRG Welcomes Newest Board Member Eric Biegansky
The Life Raft Group is pleased to announce the appointment of Eric Biegansky to our Board. Eric brings his passion for supporting GIST patients and for finding a cure to his new role.
Global Representative Spotlight – Amelia Yeo
I was a piano teacher and performing pianist for the past 13 years but stopped work completely this year so I could spend more time with Andrew and see to his needs. We were so lost in the beginning because we did not know what to expect, due to the relative rarity of GISTs.
NORD Hosts Rare Disease Summit
The National Organization for Rare Disorders (NORD) held a Rare Disease Summit in Washington, D.C. October 20019, hosting several thousand people comprised of patients, advocates, non-profit employees, health providers, IT developers, pharmaceutical staff, physicians and researchers, and representatives from government entities.
Night to Fight Cancer Lights Up the Night for #GISTresearch
The 16th annual Night to Fight Cancer (NTFC) took place on October 24th, 2019 at the Midtown Loft and Terrace in New York City. This annual event benefits The Life Raft Group’s research programs.
How Technology Is Changing the Way We Look at Health Data, & How Patients Are Critical to Its Success
Pete Knox represents The Life Raft Group and GIST patients at ISPOR’s 2019 European Conference, held November 2nd-6th in Copenhagen, Denmark.
Keep up with the latest news, events, and opportunities to help.
To contact The Life Raft Group, please call 973-837-9092
PARTNERS & AFFILIATIONS
