The Life Raft Group has been an integral part of a pan-cancer Working Group designed to determine consistent terminology around biomarker or mutational testing. The goal is to communicate to patients and the larger community in plain, patient friendly and consistent language what these terms mean, and how they impact on precision medicine.
May 19, 2020 is OVAC Lobby Day highlights its work delivering a unified message to Congress and the White House on the need for increased cancer-related appropriations. Held virtually this year due to the COVID-19 pandemic, these requests affect millions of Americans facing cancer each day.
The LRG has been granted permission from the NCCN to share the most recent NCCN Guidelines for Patients® with soft tissue sarcoma, most specifically the section on GIST, which the LRG has endorsed.
The LRG was featured in the MyPART Minute April edition, in the Advocacy Spotlight section, which detailed our mission, core values, and the story of our collaboration with the National Institutes of Health to create the annual NIH Pediatric and Wildtype GIST Clinic.
When facing a diagnosis of cancer, self-advocacy becomes an important survival skill for patients and caregivers. These stories illustrate what an ordinary person can accomplish due to extraordinary circumstances and how they affected change for so many people with GIST.
Our Rare Disease Day offering is a whitepaper titled 'Partnership for Survival – Treating the Rarest of the Rare' detailing how a collaboration with the NIH has become a model for other advocacy groups and researchers.
Deb Melikian, patient advocate, and Dr. Jason Sicklick, GIST expert & researcher, share the story of their unique partnership which began at an LRG GIST Day of Learning in the rare partners issue of RARE Revolution Magazine.
An LRG GIST Mentor helps patients and their caregivers through their GIST journey – from receiving a diagnosis to navigating different resources of information, support, treatment options, side effects, etc.
The National Organization for Rare Disorders (NORD) held a Rare Disease Summit in Washington, D.C. October 20019, hosting several thousand people comprised of patients, advocates, non-profit employees, health providers, IT developers, pharmaceutical staff, physicians and researchers, and representatives from government entities.
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.