Advocacy

RARE Partnership in Advocacy, Funding, and Research for Gastrointestinal Stromal Tumor
RARE Partnership in Advocacy, Funding, and Research for Gastrointestinal Stromal Tumor

Advocacy, News, Research, SDH-Deficient GIST

RARE Partnership in Advocacy, Funding, and Research for Gastrointestinal Stromal Tumor

Partnerships and collaborations are critical to the progress of research in rare diseases. GIST specialist & Pediatric & SDH-Deficient GIST Consortium member, Dr. Jason Sicklick, and LRG member, Debra Melikian, are working together find a cure for succinate dehydrogenase-deficient gastrointestinal stromal tumors (SDH-deficient GIST), a hereditary rare cancer syndrome which claimed the lives of Debra’s husband and her son Merak.

By LRG Staff|2021-01-13T11:53:21-05:00July 14th, 2020|Advocacy, News, Research, SDH-Deficient GIST|

GIST Awareness Day 2020 – Hungary
GIST Awareness Day 2020 – Hungary

Advocacy, Global, News

GIST Awareness Day 2020 – Hungary

András Szekfü, of Budapest, Hungary, shares his GIST journey in this video for GIST Awareness Day, a day set aside to bring awareness of this disease.

By LRG Staff|2020-07-20T08:55:49-04:00July 10th, 2020|Advocacy, Global, News|

Life Raft Group Collaborates on White Paper Published by Cancer Leaders
Life Raft Group Collaborates on White Paper Published by Cancer Leaders

Advocacy, News

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

OVAC 2020 Virtual Lobby Day
OVAC 2020 Virtual Lobby Day

Advocacy, News, Research

OVAC 2020 Virtual Lobby Day

May 19, 2020 is OVAC Lobby Day highlights its work delivering a unified message to Congress and the White House on the need for increased cancer-related appropriations. Held virtually this year due to the COVID-19 pandemic, these requests affect millions of Americans facing cancer each day.

By Carol Tordella|2020-06-05T13:53:47-04:00June 5th, 2020|Advocacy, News, Research|

NCCN Guidelines for GIST for Patients
NCCN Guidelines for GIST for Patients

Advocacy, News, Patient Support

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.

By LRG Staff|2020-05-19T11:30:44-04:00May 5th, 2020|Advocacy, News, Patient Support|

LRG Featured in the MyPART Minute
LRG Featured in the MyPART Minute

Advocacy, News

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.

By LRG Staff|2020-04-07T08:37:47-04:00April 7th, 2020|Advocacy, News|

Passion Translates to Advocacy Across the Globe
Passion Translates to Advocacy Across the Globe

Advocacy, News, Newsletter

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

Partnership for Survival – Treating the Rarest of the Rare
Partnership for Survival – Treating the Rarest of the Rare

Advocacy, News, Research

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

Patient Advocate’s Story Unfolds in RARE Revolution Magazine
Patient Advocate’s Story Unfolds in RARE Revolution Magazine

Advocacy, News, SDH-Deficient GIST

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

First LRG GIST Mentor Training Takes Place in Wayne, NJ
First LRG GIST Mentor Training Takes Place in Wayne, NJ

Advocacy, News, Newsletter

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 Diana Nieves|2022-07-14T14:33:16-04:00December 18th, 2019|Advocacy, News, Newsletter|