Causes: Digestive Diseases & Disorders, Health
Mission: The Life Raft Group (LRG) is an organization that directs research to find a cure for a rare cancer and help those affected through support and advocacy until we do.
Results: We have succesfully held meetings and conferences, most notably, Life Fest, which is a bi-ennial weekend event that brings patients & caregivers together as well as doctors & pharmaceutical representatives. We have created numerous education materials, including pamphlets, brochures, webcasts and a monthly newsletter. We have also created and maintained a comprehensive and sophicated patient registry, which allows us to track and report on key issues with GIST, as well as a world-class research team with the best GIST researchers in the world. The Team has spent 4 years in search of the cure for GIST and has achieved successes on a broad number of fronts.
Target demographics: patients living with gastrointestinal stromal tumors (GIST) and their friends, family, caregivers & doctors.
Direct beneficiaries per year: Patients in over 150 countries.
Geographic areas served: Over 150 countries
Programs: Education -The LRG aims to empower and educate GIST patients and their caregivers through innovative programs such as our GIST Days of Learning (GDOL), our Expert Patient Training and our biennial Life Fest convention. We provide updated content through our website, Newsletter, and through our social media presence. Our participation in the Annual NIH Clinic helps bring together leading experts and patients with SDH-deficient GIST. We provide online lists of GIST experts and a Clinical Trials database to help expedite access to the best treatment. Research -The LRG has been on the front lines of collaborative research since our inception. Our current collaboration with Columbia University-New-York Presbyterian is but one example. We maintain the largest GIST Patient Registry in the world, and through our GIST Collaborative Tissue Bank are able to provide valuable data and tissue for researchers. Our innovative side effects management tool, SideEQ, provides information for patients and for research. Advocacy-Through one-on-one interactions with our patients and caregivers and by actively participating in advocacy organizations such as One Voice Against Cancer (OVAC) and NORD (National Organization for Rare Disorders), we help assure that GIST patients have a voice and can access effective treatment.
Mission: The Life Raft Group (LRG) is an organization that directs research to find a cure for a rare cancer and help those affected through support and advocacy until we do.
Results: We have succesfully held meetings and conferences, most notably, Life Fest, which is a bi-ennial weekend event that brings patients & caregivers together as well as doctors & pharmaceutical representatives. We have created numerous education materials, including pamphlets, brochures, webcasts and a monthly newsletter. We have also created and maintained a comprehensive and sophicated patient registry, which allows us to track and report on key issues with GIST, as well as a world-class research team with the best GIST researchers in the world. The Team has spent 4 years in search of the cure for GIST and has achieved successes on a broad number of fronts.
Target demographics: patients living with gastrointestinal stromal tumors (GIST) and their friends, family, caregivers & doctors.
Direct beneficiaries per year: Patients in over 150 countries.
Geographic areas served: Over 150 countries
Programs: Education -The LRG aims to empower and educate GIST patients and their caregivers through innovative programs such as our GIST Days of Learning (GDOL), our Expert Patient Training and our biennial Life Fest convention. We provide updated content through our website, Newsletter, and through our social media presence. Our participation in the Annual NIH Clinic helps bring together leading experts and patients with SDH-deficient GIST. We provide online lists of GIST experts and a Clinical Trials database to help expedite access to the best treatment. Research -The LRG has been on the front lines of collaborative research since our inception. Our current collaboration with Columbia University-New-York Presbyterian is but one example. We maintain the largest GIST Patient Registry in the world, and through our GIST Collaborative Tissue Bank are able to provide valuable data and tissue for researchers. Our innovative side effects management tool, SideEQ, provides information for patients and for research. Advocacy-Through one-on-one interactions with our patients and caregivers and by actively participating in advocacy organizations such as One Voice Against Cancer (OVAC) and NORD (National Organization for Rare Disorders), we help assure that GIST patients have a voice and can access effective treatment.
155 US Highway 46 Suite 202, Wayne, NJ 07470
973-837-9092
Health
Wayne
