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 [...]
Lorie (Skelton) Perry was a GIST patient who passed away on November 11th, 2020. She was known to her family for many things. Among them were her warmth, her willingness to help others, and her talents as a baker. Her family wanted to find a way to honor her memory with a fundraiser.
In our LRG community, we’ve seen many examples of GISTer family planning but also women who have found out they had GIST while they were pregnant. Here are some helpful resources
The Life Raft Group is pleased to welcome Mr. Young Jae Kim (YJ) as the new LRG representative (liaison) in our global network!
Luciana Holtz de Camargo Barros, founder and president of Instituto Oncoguia, authored this article about the creation and advocacy issues of this cancer patient advocacy organization based in São Paulo, Brazil.
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.
In a recent study, researchers at University of California San Diego School of Medicine identified new therapeutic targets that could lead to new treatment options for patients. The study, published in the February 18, 2021 online edition of Oncogene, found that specific cell-to-cell communication influences GIST biology and is strongly associated with cancer progression and metastasis.
Dr. Annes reviewed the hPPGL Syndrome with particular focus on the underlying genetics basis and related tumor risks.
Understanding the role of mutations and biomarker testing is one of most important things patients must learn. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. This video talks about why it's important.
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Bonita Morgan shares her story.
