The Life Raft Group, or the LRG, as we like to call it, has been working to improve patient survival for those living with gastrointestinal stromal tumor (GIST) for over 20 years. This unique patient advocacy organization was created (in 2002) by a group of caregivers and patients determined to find a path to survival - literally fighting for life & hope, a point in time when there was no clear treatment path for those with GIST.

Today the organization reaches thousands of patients & caregivers a year with educational resources, support groups, a mentor program, and one-on-one case management to help navigate the life-long challenges of this rare cancer. Uniquely the the LRG also began the first, and now largest GIST patient registry, which has gathered the GIST histories of over 2900 patients from diagnosis to death.

In the past two decades, we have seen the development of four treatment lines, dozens of clinical trials and many important line of clinical research into the various mutations of GIST.

We support patient survival through:

  • Patient & Caregiver Support - One-on-one consultations for patients & caregivers.

  • Mentoring programs - Connecting individuals with experienced GIST patients & caregivers.

  • Support groups - In-person & virtual, offering a space for connection and shared experiences.

  • Educational materials & webinars, and a GIST specialist database to help patients make informed decisions.

  • Educational Events - GIST Days of Learning (GDOL): Free, one-day educational events held 3-5 times a year across the U.S.

  • Life Fest: A biennial weekend conference featuring educational sessions and time to connect with experts & the GIST community.

  • Research & Advocacy - The LRG Patient Registry is a dynamic database tracking data from thousands of GIST patients globally, helping to drive research and improve treatment strategies.

  • Collaborations - with medical professionals and researchers to support groundbreaking studies and clinical trials.

  • Virtual Tumor Boards - where experts review complex cases and discuss treatment options.

  • Advocacy efforts to improve patient access to cutting-edge treatments and clinical trials.