Volunteer Spotlight
Raising awareness for the GIST community is important to the DeLorenzo family. Recently they held their 14th annual barbecue where friends and family gathered to fundraise for GIST research in support of The Life Raft Group.
Chicago Patient Support Group
The Chicago Area GIST Patients Support Group made history this year! This group has been meeting the longest of any LRG support group - continuously since 2002.
Finding a Ride to Your Doctor’s Appointments
Over 3.6 million people miss their medical appointments each year, preventing them from getting the care that they need or getting access to the medicine that could help them. People report that distance to the doctor’s office, cost of the transportation, and access to a driver or public transportation as the main reasons that they are having a challenge with transport.
Increasing the Quality and Efficiency of Clinical Trials
The mission of the Clinical Trials Transformation Initiative (CTTI) is to develop and drive the adoption of practices that will increase the quality and efficiency of clinical trials.
News from the 17th NIH Pediatric and Wildtype GIST Clinic
The NIH Pediatric and Wildtype GIST Clinic is a collaboration amongst researchers, specialists, patient advocates, patients and family members, with the goal of furthering the knowledge of SDH-deficient gastrointestinal stromal tumors (GIST) in order to develop more effective therapies.
Health Decisions Tour in Latin America
Collaboration among patient groups and working together in setting common goals is vital. Together we can have a stronger voice to achieve our participation in the decision-making on health issues.
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.
A ‘Clinical Trial of One’
October's LRG newsletter features artist Douglas Morgan, who found himself with a rare GIST mutation and no treatment options until an innovative oncologist and a compassionate gesture by a pharmaceutical company gave him a chance to receive a unique treatment.
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.