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. [...]
International advocates meet in Wayne, NJ, at the annual New Horizons GIST Conference to discuss scientific updates, regional issues, and unmet needs for the global GIST community in May 2019.
OVAC is a coalition of over 50 nonprofit cancer organizations that advocate on behalf of cancer patients to deliver a unified message to Congress and to the White House on the need for increased [...]
This GIST DO IT Walk was held in Verona, NJ on May 4th, 2019 and held in honor of GISTer Ted Wolf who passed away in July 2018. This gallery includes photos of friends, family, and staff walking to raise money for #GISTresearch.
John Abrams, our new LRG State Leader for Colorado, has a vision of helping others cope with GIST. John’s story spans a journey with three types of cancer. First, misdiagnosed in 1997 with leiomyosarcoma, [...]