NCCN Guidelines for GIST for Patients
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.
LRG Featured in the MyPART Minute
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.
Passion Translates to Advocacy Across the Globe
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.
Partnership for Survival – Treating the Rarest of the Rare
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.
Patient Advocate’s Story Unfolds in RARE Revolution Magazine
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.
First LRG GIST Mentor Training Takes Place in Wayne, NJ
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.
NORD Hosts Rare Disease Summit
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.
Health Decisions Tour in Latin America
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: All Year Long
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.”
LRG Assisted in CAP Guidelines Modifications with a Diagnostic Algorithm
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.