Archive for April, 2017

Today is Undiagnosed Day! Join Us to Honor the Undiagnosed Rare Disease Community

April 29, 2017 10:01 am

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 All rare diseases were once Undiagnosed.  What does “Undiagnosed” mean? “An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease...

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Undiagnosed: An Update on the Szajnuks

April 27, 2017 5:31 am

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Anyone living with an undiagnosed disease knows how hard it is every single day to persevere. When the disease is invisible, it is even harder because you have to...

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Bio: Ava Szajnuk (Zanik)

April 16, 2017 9:26 pm

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Ava Szajnuk (Zanik) is a 16-year-old sophomore at Skyline High School in Salt Lake City, Utah. She was born a healthy child and hit all of her milestones...

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The Undiagnosed Alliance: Mission and Goals

April 6, 2017 9:49 am

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The Undiagnosed Alliance (the Alliance) is a coalition of undiagnosed rare disease stakeholders coming together with the purpose to foster unified advocacy among patient organizations, individuals, and stakeholders...

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Taylor-12q14.1 Microdeletion Syndrome

April 1, 2017 3:36 pm

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Taylor-age 3 Diagnosis-12q14.1 Microdeletion Syndrome Photographs were donated by Season Atwater of Aware of Angels.   This story first appeared on Aware of Angels.  Our little guy Taylor...

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