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Key Achievements

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Problem: 83% of people living with celiac disease remain undiagnosed or misdiagnosed.

Solution: Beyond Celiac educates patients on how to talk to their biological relatives (the most at-risk population) about getting tested.

The vast majority – 83% – of people living with celiac disease are still not diagnosed or are misdiagnosed with the wrong condition. To combat this problem, we educate people already diagnosed on how to have an effective conversation with their family about their celiac disease risk and the need for testing. Because biological relatives are the most at-risk population, this is a targeted approach for reaching those most likely to develop the serious genetic autoimmune disease.

In 2012, Beyond Celiac launched Family Talk, a series of tools for people diagnosed with celiac disease to talk with their family members about their risk. As a result, more than 70% of the Beyond Celiac community started a conversation with at least one at-risk, untested relative over the course of one year. Their actions led to more than 1,600 at-risk relatives being tested and 130 of those relatives receiving a celiac disease diagnosis.

Motivated to stimulate long-term results, Beyond Celiac was awarded a grant in 2014 to develop a sustainable and reproducible communications strategy and family testing solution for the field.

In 2015, Beyond Celiac launched “Seriously Celiac Disease: Talk. Tell. Test.,” the only national campaign dedicated to raising awareness among people with diagnosed celiac disease about the importance of having a serious conversation with relatives who may be genetically at-risk for the condition. Its tactics are grounded in the Health Belief Model, one of the most widely used conceptual frameworks in health behavior. Early results show that 95% of those untested family members surveyed after using “Talk. Tell. Test.” resources say they are likely to get tested.

Moving into 2016, Beyond Celiac will unveil the next steps of this campaign, which includes engaging patients in local U.S. communities to become active and engaged participants in their healthcare. Beyond Celiac aims to increase celiac disease diagnoses, reduce costs and improve health outcomes.

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