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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|

Global Representative Spotlight – Amelia Yeo

I was a piano teacher and performing pianist for the past 13 years but stopped work completely this year so I could spend more time with Andrew and see to his needs. We were so lost in the beginning because we did not know what to expect, due to the relative rarity of GISTs.

By |2019-12-18T10:46:04-05:00December 18th, 2019|News, Newsletter, Patient Support|

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|

Night to Fight Cancer Lights Up the Night for #GISTresearch

The 16th annual Night to Fight Cancer (NTFC) took place on October 24th, 2019 at the Midtown Loft and Terrace in New York City. This annual event benefits The Life Raft Group’s research programs.

By |2019-12-19T11:21:57-05:00December 18th, 2019|Fundraising, News, Newsletter|

How Technology Is Changing the Way We Look at Health Data, & How Patients Are Critical to Its Success

Pete Knox represents The Life Raft Group and GIST patients at ISPOR’s 2019 European Conference, held November 2nd-6th in Copenhagen, Denmark.

By |2019-12-19T11:22:21-05:00December 18th, 2019|Conferences, News, Newsletter|

The LRG Partners with GIST Survivor on Facebook

GIST Survivor is a private group and only members can see who is in the group and what is posted. The group is for GIST survivors who are searching for a cure and living well along the way. Currently 1,235 people are members of the group and this number is increasing daily.

By |2019-12-18T15:05:44-05:00December 18th, 2019|News, Newsletter|

Are YOU Seeing a GIST Specialist?

When diagnosed with any disease, it's important to see a specialist who will have the proper experience to guide you to an effective treatment protocol. This LRG survey queried LRG members about physicians, the physician's ability to answer their questions, and who recommended their GIST specialist in order to get a snapshot of patients' satisfaction with their with their care.

By |2019-12-18T14:50:30-05:00December 18th, 2019|News, Newsletter, Patient Registry|