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So far Carol Tordella has created 10 blog entries.

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|

A ‘Clinical Trial of One’

October's LRG newsletter features artist Douglas Morgan, who found himself with a rare GIST mutation and no treatment options until an innovative oncologist and a compassionate gesture by a pharmaceutical company gave him a chance to receive a unique treatment.

By |2019-11-08T11:08:49-05:00October 29th, 2019|Clinical Trials, Member Stories, News, Newsletter|

The Werners – Finding the New Normal Living with Wildtype GIST

Bryce Werner was a regular middle-schooler living an average 12-year-old life in Pennsylvania when suddenly everything was thrown wildly left of normal by a GIST diagnosis.

By |2019-11-08T11:05:18-05:00June 29th, 2018|Member Stories, News, Newsletter|