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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.

By |2019-12-18T11:41:28-05:00December 18th, 2019|Advocacy, News, Newsletter|

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.

By |2019-12-18T11:06:15-05:00December 18th, 2019|Advocacy, Conferences, News, Newsletter|

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.

By |2019-08-29T10:18:35-04:00August 29th, 2019|Advocacy, Mutational Testing, News|

New Horizons – International Focus on the Power of Real World Data to Enhance Advocacy Efforts

New Horizons 2019 Meeting Gathers Advocates in NJ Not many of our readers know that The Life Raft Group has been involved with a global network of advocates since its inception. Every year country [...]

By |2019-08-26T16:17:01-04:00June 20th, 2019|Advocacy, Global, News, Newsletter|

One Voice Against Cancer (OVAC) Advocates for Cancer Patients

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 [...]

By |2019-07-02T14:28:52-04:00June 20th, 2019|Advocacy, News, Newsletter|