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.
GIST DO IT is an amazing way to educate the medical community and the general public about GIST. We would like to take it to the next level and encourage everyone to “GIST DO IT All Year Long.”
The LRG, in collaboration with the Pediatric & SDH-Deficient GIST Consortium and key opinion leaders among the GIST pathology community (with Dr. Brian Rubin taking the lead), played a significant role in changing CAP Guidelines. CAP Guidelines are protocols for pathologists to instruct them on the process of diagnosing a disease based on tumor tissue samples.
This is the photo gallery for the New Horizons GIST Conference for 2019 held in NJ and hosted by the Life Raft Group. This international meeting aims to unify the global GIST patient advocacy community with key opinion leaders and facilitate ways to increase survival worldwide.
These are some memorable photos from Salud con Datos 2019. On May 7th, representatives from Colombia, Chile, Mexico, and The Life Raft Group assembled for the annual Salud con Datos meeting in Wayne, NJ. [...]