How Technology Is Changing the Way We Look at Health Data, & How Patients Are Critical to Its Success
Pete Knox represents The Life Raft Group and GIST patients at ISPOR’s 2019 European Conference, held November 2nd-6th in Copenhagen, Denmark.
Making the Most of the Holiday Season
The holiday season is quickly approaching and the stress of the holidays can bring up mixed feelings for many people. When you are struggling with a cancer diagnosis such as GIST, the holidays can be an extra-challenging time of year.
The LRG Partners with GIST Survivor on Facebook
GIST Survivor is a private group and only members can see who is in the group and what is posted. The group is for GIST survivors who are searching for a cure and living well along the way. Currently 1,235 people are members of the group and this number is increasing daily.
Are YOU Seeing a GIST Specialist?
When diagnosed with any disease, it's important to see a specialist who will have the proper experience to guide you to an effective treatment protocol. This LRG survey queried LRG members about physicians, the physician's ability to answer their questions, and who recommended their GIST specialist in order to get a snapshot of patients' satisfaction with their with their care.
Increasing Survival without Borders
The Life Raft Group is pleased to announce the official establishment of our Regional Patient Registry, a partnership with Latin America, which will collect medical history and treatment information from more than 600 GIST patients who are represented by Fundación GIST Mexico, Fundación GIST Chile, and Pontificia Universidad Católica de Chile.
Sisters of the Heart for a Cure
Wendy Williams became a member of The Life Raft Group in August of 2017. She was introduced to the LRG by one of her closest friends, Michelle MacLea, whose son Connor was diagnosed with SDH-deficient GIST in 2017.
Night To Fight Cancer 2019
The 16th annual Night to Fight Cancer (NTFC) took place on October 24th, 2019 at the Midtown Loft and Terrace in New York City. This annual event benefits The Life Raft Group’s research programs. LRG Board President Jerry Cudzil co-hosted the event with colleague, Matthew Knopman.
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.