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Emily’s Story: How Access to Care Changes Lives

Video: Catching up with one patient 10 years after her family advocated for access.



Emily Bartko is a one in a million kid. The 13-year-old from Las Vegas is living with congenital afibrinogenemia, an ultra-rare hereditary bleeding disorder that the National Institutes of Health says affects one in one million newborns. People with the condition can suffer uncontrolled bleeding due to a missing factor in their blood.

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Ten years after her family went to Washington, D.C. to successfully advocate for access to care, Emily is living the life of a typical American teen. Hear from Emily and learn more about her journey in the video above.