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So far Carol Tordella has created 17 blog entries.

Long-Term Survivor Stories – Chuck Korte & Dina Wiley

For GIST patients, long term survival is the ultimate goal. A number of factors may influence long term survival – some of these are demographic and clinical, like mutational subtype and genetic factors. However, there are a number of others that are perhaps more subtle, such as lifestyle, attitude, and access to treatment, experts, and advice.

By |2020-06-29T16:41:57-04:00June 25th, 2020|Member Stories, 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 |2020-03-09T11:56:59-04:00February 28th, 2020|Advocacy, News, Newsletter|

Building a Network of Rare Specialists

Margo Shoup is a doctor on a mission. She moved from the Chicago area to Connecticut almost a year ago and has been the catalyst behind the creation of specialized disease teams targeting cancer care in a health system that covers an extensive area from western Connecticut up into the Hudson Valley of New York State.

By |2020-02-28T13:56:02-05:00February 28th, 2020|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|
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