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Undiagnosed Day is April 29th! Join Us to Honor the Undiagnosed Rare Disease Community

April 27, 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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RUN’s NBA Initiative: NBA Teams to Host Rare and Undiagnosed Families!

April 12, 2017 2:40 am

6 pledge likes

RUN’s NBA Initiative is growing in 2017! NBA teams: the Milwaukee Bucks, the Utah Jazz, the Phoenix Suns, the Washington Wizards and the Boston Celtics are already scheduled to host rare and undiagnosed families in...

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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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Face to face: A Fairy-tale by Greg Lopez

March 30, 2017 3:57 pm

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Face to face: A Fairy-tale by Greg Lopez   Face to face. ​​Awestruck! As the saying goes, a picture is worth a thousand words. But it is also true that...

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UNDIAGNOSED is a DIAGNOSIS: The Szajnuk’s Journey Updated!

March 21, 2017 10:40 am

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UNDIAGNOSED IS A DIAGNOSIS: Living in a Diagnostic Odyssey x 4 By Gina Szajnuk  I have three children that are officially diagnosed as Undiagnosed. They have an Undiagnosed...

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Rachel Nielsen: Admitted For Serious Infection and Prepping for Surgery

March 11, 2017 10:17 pm

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Kate Nielsen received a call this morning at 1:00a that her daughter, Rachel, does in fact have a bacteria infection in her central line. She will have it...

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Rachel Nielsen: Harmons Cooking School Experience from Make-A-Wish

March 3, 2017 8:19 pm

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Special thanks to Chef Evan Francois and Photographer Renata Stone. Thank you to everyone at Harmons Cooking School. Thank you to Bob Leibo and everyone at Make-A-Wish. I...

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Stockton-Undiagnosed

March 2, 2017 9:45 pm

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Stockton: Age 2 Diagnosis: Undiagnosed USA Stockton is our Undiagnosed Medical Mystery, though we prefer to call him our medical miracle. Though his root condition (undiagnosed genetic syndrome)...

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