Global Patient Involvement in Sarcoma Care
A recent paper published in Cancers by CTOS and SPAEN highlights major findings and proposes potential future steps in global sarcoma care.
A Positive Spin for 2022 – Jimit Mody’s GIST Journey
Jimit Mody shares his GIST journey and how a positive attitude and determination keeps him going.
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.
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.
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.
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.
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 [...]
The LRG Welcomes Young Jae Kim as Our Newest Liaison
The Life Raft Group is pleased to welcome Mr. Young Jae Kim (YJ) as the new LRG representative (liaison) in our global network!
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.
GIST & Creativity – Gewelry for GIST with Christine Gonzales
Christine, a former elementary school teacher, is raising three sons with husband Adam, in New Mexico. She doesn’t feel that creativity has always had a place in her life, but teaching elementary school always provides opportunities for innovation and creative thinking so perhaps it’s a matter of perspective.