Our mission is to enhance the survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts.
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 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.
Marc Wasserman
Diagnosed in 2006 with Adult GIST.
Bella Rocco
Diagnosed in 2009 with Pediatric
(SDH-Deficient) GIST.
The LRG and NIH Collaborate on Virtual Tumor Boards to Review Challenging Cases
In this issue of LRG Science, we highlight the power of collaboration in medicine with a recap of the Virtual Tumor Board co-hosted with the NIH. Due to the pandemic, The Life Raft Group was asked to organize a Virtual Tumor Board to assure that challenging cases were presented in order to help the patients and their treating physicians develop an effective treatment plan.
Partnership for Survival – Treating the Rarest of the Rare
Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.
Calling All GEMs!
Become a GEM today! Help us continue our programs and services for GIST patients by giving a monthly recurring donation. Every little bit helps us to further research and support GIST patients and caregivers.
Heroes of Rare Disease: The 2021 Rare Impact Awards
Dr. Jason Sicklick, Blueprint Medicines Among Honorees Released 2/23/21 by NORD The National Organization for Rare Disorders (NORD®) announced this year’s [...]
Cupcake Records Honors Lorie (Skelton) Perry
Lorie (Skelton) Perry was a GIST patient who passed away on November 11th, 2020. She was known to her family for many things. Among them were her warmth, her willingness to help others, and her talents as a baker. Her family wanted to find a way to honor her memory with a fundraiser.
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.
GLOBAL PARTNERS
