July 13 is GIST Awareness Day: Spreading Rare Disease Awareness

July 13th 2021 will be recognized as GIST Awareness Day. This is a day set aside to help spread awareness about gastrointestinal stromal tumor (GIST), a rare disease, among the medical field and the general public. Events surrounding this day are held each year around the world.

The event was first started by the Life Raft Group. The summer of 2013 saw the organization kick off its campaign called Rare 13. This name was meant to highlight the fact that 13 people in the US are diagnosed with GIST every day. The campaign was a success and led to the establishment of GIST Awareness Day, which was first recognized the following year. 

About Gastrointestinal Stromal Tumor (GIST)

Gastrointestinal stromal tumor (GIST) is a form of tumor that can appear in the digestive tract. These tumors appear in the interstitial cells of Cajal, which control smooth muscle activity. These tumors are connected to mutations that affect the KIT gene or the PDGFRA gene in the vast majority of cases. In most cases, these mutations appear sporadically and are only rarely inherited. Typically they occur as part of another genetic disorder when they are inherited. They can occur in a number of locations along the digestive tract, most often the stomach, small intestine, or esophagus. Symptoms may include abdominal pain, difficulty swallowing, liver metastases, and gastrointestinal bleeding. Treatment usually involves surgery or medications when surgery is not possible. GIST generally does not respond to radiation or chemotherapy. To learn more about GIST, click here.

This year, the Life Raft Group is celebrating the event with a special TikTok challenge. This year’s campaign theme is “It’s Time.” The goal this year is to encourage the GIST community to share their experiences related to biomarker testing and how it has impacted their experience with treatment. This testing is essential for patients to get the most effective treatment.

Instructions: Create a brief video on TikTok discussing how biomarker testing has guided your treatment or a loved one’s treatment. Make sure to tag the organization (@liferaftgroup) when you post, and don’t forget to add the hashtags #ItsTime #TimeToGetTested #GISTAwarenessDay. Alternatively, you can send a video to social@liferaftgroup.org where you will have a chance to be featured on the group’s social media.

Click here for more resources related to the challenge and GIST Awareness Day.

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