In Memoriam – Dr. Nikhil Guhagarkar
Dr. Nikhil Guhagarkar found opportunities to balance life as a father, husband, medical professional, patient advocate and cancer survivor.
LRG Data Leads to Change
The College of American Pathologists (CAP) released an updated version of its GIST Biopsy and Resection Cancer Protocols. Pathologists use CAP Cancer Protocols in the process of diagnosing a disease.
Partnering with Selnet
The Life Raft Group is pleased to announce a new partnership with SELNET, a project which is creating a multidisciplinary network of European and Latin American clinical and translational specialists. This project’s goal is to improve diagnosis and clinical care in sarcomas and establish guidelines for referral policies, diagnostic methods, clinical practice guidelines among other necessary changes to current practices.
Collaborating with the NCCN FOUNDATION
The NCCN Foundation produces patient booklets that contain evidence-based disease information and important guidance to help patients formulate questions that are important to them. The Life Raft Group, a leading patient advocacy organization, is working with the Foundation to endorse these guidelines.
Teaming up with MyPART
MyPART’s mission is to engage patients as partners in rare tumor research. As an advocacy partner, our aim is to improve the outcomes of patients with rare tumors and identify and engage patients through education and the dissemination of information.
First Symposium on Personal Control of Genomic Data for Research Held at NIH
Symposium aimed to accelerate cancer research and to make more therapies available to more patients, while also improving our ability to prevent cancer and detect it at an early stage through individual projects.
New Horizons – International Focus on the Power of Real World Data to Enhance Advocacy Efforts
International advocates meet in Wayne, NJ, at the annual New Horizons GIST Conference to discuss scientific updates, regional issues, and unmet needs for the global GIST community in May 2019.
SDH in Action!
“You're off to Great Places! Today is your day! Your mountain is waiting, So... get on your way!” ― Dr. Seuss, Oh, The Places You'll Go! Dear SDH-deficient GIST [...]
Pediatric & SDH-Deficient GIST Consortium Update
Setting the Pace for the Future In July of 2018 at Life Fest, The Life Raft Group brought together a team of pediatric & SDH-deficient GIST experts for a symposium focused on this rare [...]
Vitrakvi Approved
New Drug Approved for Patients with Rare Gene Fusion By Sara Rothschild, MPH, Vice President, Program Services & Jerry Call, Data Analyst The Food and Drug Administration granted accelerated approval on November 26th to [...]