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.
Dr. Thomas Mühlenberg Receives 2020 GIST Award
The 2020 GIST award goes to Dr. Thomas Mühlenberg of the University of Duisburg-Essen The GIST Group Switzerland, the support group [...]
Words of Wisdom from Women in Sarcoma
We asked the amazing honorees of the first annual Women in Sarcoma Gala some personal questions to help us learn more about them, and their experiences. Have you RSVP'd for the Gala on Dec. 10 at 6PM ET? RSVP today for this free, virtual event, to be held in loving memory of GISTer Nikki Morales.
Life Raft Group Participates in Virtual CTOS Conference
The annual meeting of CTOS (Connective Tissue Oncology Society) will be held virtually this year due to the global pandemic.
Recognizing Our Women in Sarcoma Gala Honorees 2020
The Women in Sarcoma Gala, the culmination of the Women in Sarcoma series for 2020, will recognize medical professionals who have made an exceptional difference in the lives of GIST patients and their families. In addition, we will also honor two amazing sarcoma patients who have met the challenge their disease presented and have gone above and beyond to make a difference in the rare disease community.
Honoring the Memory of Nikki Morales – the Women in Sarcoma Gala
Join us for the first virtual annual Women in Sarcoma Gala in loving memory of Nikki Morales. Nikki Morales was a patient advocate, philanthropist, public speaker, volunteer, and an inspiration for so many within the sarcoma community.
In Memoriam – Dr. Nikhil Guhagarkar
Dr. Nikhil Guhagarkar found opportunities to balance life as a father, husband, medical professional, patient advocate and cancer survivor.
How Can B12 Help GIST Patients?
Fatigue is a common symptom experienced by GIST patients. Many factors may cause or contribute to lethargy, such as insomnia, malnutrition, iron deficiency to name a few, but a vitamin B12 deficiency in particular could be the root of the issue for some GIST sufferers.
GLOBAL PARTNERS
