July 30th is Gastroschisis Awareness Day: Spreading Rare Disease Awareness

July 30th, 2020 is recognized as Gastroschisis Awareness Day. This event aims to help spread awareness about gastroschisis, a rare birth defect, among both the general public and within the broader medical community. Lack of awareness is one of the greatest obstacles to improving the lives and outcomes of rare disease patients of all kinds. Continue reading to learn more about how you can become involved.

About Gastroschisis

Gastroschisis is a serious and uncommon birth defect in which an infant is born with part of its intestines protruding outside of the body through a hole in the abdomen, usually beside the belly button. What exactly causes this defect to appear is not entirely known; however, there are several known risk factors, such as alcohol consumption during pregnancy, tobacco smoking during pregnancy, and the mother being less than 20 years old at the time of birth. The condition can be detected prior to birth via ultrasound. Gastroschisis is fatal to the newborn if left untreated and prompt surgical intervention is the primary method of treatment. Often the exposed intestines are covered with sterile drapings before the operation. Multiple surgeries are necessary in most cases. While long recovery periods are often necessary and there are risks of infections and other complications, with appropriate treatment the survival rate is around 90 percent. To learn more about gastroschisis, click here.

Awareness Day Events

For this year’s awareness day, a variety of both virtual and in-person events have been planned. Events have been organized in the United Kingdom as well as in several US states, including Florida, Mississippi, Missouri, Nebraska, New Jersey, New York, North Carolina, Ohio, Oregon, and Washington. You can see the full list of these events and contact info for the organizers here.

Note that this list includes both in-person and virtual events. However, many of the in-person activities may have been canceled due to the ongoing coronavirus/COVID-19 pandemic. Cases are on the rise right now so do your best to social distance and stay at home as much as possible. If you are unsure if an event is happening, you should contact the event organizer directly.

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