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Life Raft Group Collaborates on White Paper Published by Cancer Leaders

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.

By |2020-07-07T10:21:41-04:00July 7th, 2020|Advocacy, News|

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.

By |2020-03-09T11:56:59-04:00February 28th, 2020|Advocacy, News, Newsletter|

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.

By |2020-02-28T14:30:39-05:00February 27th, 2020|Advocacy, News, Research|

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.

By |2020-02-04T08:53:11-05:00February 4th, 2020|Advocacy, News, SDH-Deficient GIST|

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|