About Carol Tordella

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So far Carol Tordella has created 38 blog entries.

Thriving & Challenging Yourself While Living with GIST, Elyse, Part 1

GIST patients face many obstacles and challenges to get to a place where they’d say they were thriving. Physical challenges from surgeries, pain and side effects can severely change the lifestyle and activities they enjoyed before GIST. Elsye Walker and Stijn Belmans, faced those changes and decided they wouldn’t accept an altered version of life.

By |2021-10-28T15:24:06-04:00October 28th, 2021|Member Stories, News, Newsletter|

Thriving & Challenging Yourself While Living with GIST, Stijn, Part 2

GIST patients face many obstacles and challenges to get to a place where they’d say they were thriving. Physical challenges from surgeries, pain and side effects can severely change the lifestyle and activities they enjoyed before GIST. Elsye Walker and Stijn Belmans, faced those changes and decided they wouldn’t accept an altered version of life.

By |2021-10-28T15:47:53-04:00October 28th, 2021|Member Stories, News, Newsletter|

Spotlight on LRG Global Representatives – Nandini Dabbir, India

The newest GISTer to join the ranks of LRG Global Representatives is Nandini Dabbir of Hyderabad, India. She is a the Friends of Max City Chapter Leader & GIST Advocate working with the LRG to support GIST patients on their journey.

By |2021-06-30T10:50:44-04:00June 30th, 2021|Global, News, Newsletter|

Rare Diagnosis Fosters a Passion for Biomarker Testing & Self-Advocacy

GISTer Bill Borwegan shares his inspiring GIST journey illustrating the importance of biomarker/ mutational testing and self-advocacy as a rare disease patient.

By |2021-06-29T11:57:41-04:00June 29th, 2021|Member Stories, News, Newsletter|

Heroes of Rare Disease: The 2021 Rare Impact Awards

June 28th Awards Ceremony registration:   https://livingrare.org/rare-impact-awards/ Dr. Jason Sicklick, Blueprint Medicines Among Honorees Released 2/23/21 by NORD The National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding [...]

By |2021-06-28T14:47:31-04:00February 25th, 2021|News, Research|

April Stephens, Long-Term Survivor

The average GIST patient is in their 50s or older when diagnosed with GIST. The rare exception is usually a pediatric SDH- deficient GIST, but April’s case is a case of ‘the rarest of the rare’ in that she was only 20 years old when she first encountered GIST and was not SDH-deficient.

By |2021-02-24T08:34:24-05:00February 24th, 2021|Member Stories, News, Newsletter|
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