The Life Raft Group (LRG) announced at the 2018 Biden Cancer Summit a new initiative to strengthen and advance research for effective treatments of a rare subset of GIST patients, who have been unresponsive to the current standard treatments. To incubate progress for this rare disease population, we have formed the Pediatric & SDH-Deficient GIST Consortium, a collaboration of experts with complementary skill sets to team with patients to discover targeted solutions.  

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How Can the Patient Community Get Involved?

1. Join the LRG Patient Registry which empowers patients to learn more and take charge of their own care. It allows patients to update and compare their patient medical journey with other patients with their rare disease sub-type. 

Our Registry will also serve as a research tool to be used in conjunction with the doctor consortium to better understand the natural history of the disease as well as to track tissue for research. Contact Denisse Montoya at dmontoya@liferaftgroup.org

2. Donate Tissue for Research 

The ultimate goal is to accelerate the speed at which lab research is conducted and the time it takes to translate these research findings into new GIST treatments. As a patient with a rare disease, your tissue sample from surgery can help uncover critical information to help patients like you live longer. Your sample can be accessed by a team of researchers who are doing cutting-edge research in the field. www.liferaftgroup.org/SDH-tissue-research  

3. Donate Money for Research 

 The LRG is committed to enhancing the lives of patients with pediatric and SDH-deficient GIST. Through our programs, events and donations to medical research, your contribution will help us to accelerate research and support the GIST community for years to come.  Besides individual contributions, if you are interested in hosting fundraising events or corporate fundraising, contact Diana Nieves at dnieves@liferaftgroup.org  www.liferaftgroup.org/donate 

4. Become a Volunteer 

The LRG offers a variety of opportunities for you to donate your time and skills to help support this unique community. Some of these include advocacy, patient support, focus groups, and much more. Visit our Volunteer Page. If interested, please contact volunteers@liferaftgroup.org.