Archive for the ‘Undiagnosed Disease’ Category

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Today is Undiagnosed Rare Disease Day! #UndiagnosedDay!

April 29, 2023 8:00 am

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What is Undiagnosed Day? Undiagnosed Day is to celebrate those living with an undiagnosed disease and their families as well as to remember the ones we have lost....

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It’s official! Thank you to Governor Spencer Cox for his declaration of April 29th to be Undiagnosed Rare Disease Day in Utah! #UndiagnosedDay

April 26, 2023 8:00 am

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For More Information for April 29th, 2023: Undiagnosed Rare Disease Day #UndiagnosedDay What is Undiagnosed Day? Undiagnosed Day is to celebrate those living with an undiagnosed disease and...

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Undiagnosed Day is coming up on April 29th!

March 23, 2023 9:00 am

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What is Undiagnosed Day? Undiagnosed Day is to celebrate those living with an undiagnosed disease and their families as well as to remember the ones we have lost....

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PRESS RELEASE: Undiagnosed Patient Organizations Begin Leveraging RARE-X

April 29, 2022 8:30 am

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Rare and Undiagnosed Network and Undiagnosed Diseases Network Foundation join forces with RARE-X to enable patient data collection for undiagnosed patients and families Rare and Undiagnosed Network and...

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Ava Szajnuk’s Sixth-Year Anniversary: Second Chance at Life

June 15, 2019 12:00 pm

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June 15th marks Ava’s sixth-year anniversary of her first cranial surgery during the summer of 2013. Today, also marks the first day I started to share our journey...

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Press Release: Utah Jazz

February 28, 2019 9:27 pm

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Jazz to Recognize Children from Rare and Undiagnosed Network at March 2 Game Youth to Stand with Jazz, Bucks During National Anthem SALT LAKE CITY (February 28, 2019) –...

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HB211 Passed the Utah House Unanimously!

February 19, 2019 12:00 pm

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HB211, establishing a Rare Disease Advisory Council, passed the Utah House of Representatives unanimously on Friday, February 15th, 2019! Community members gathered to watch and listen from the...

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Utah HB211: Rare Disease Advisory Council

February 13, 2019 12:19 pm

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Action Alert: The House of Representatives will consider HB211 this Friday, February 15, 2019 at 2:30, in the House Chamber. Community members can gather to watch and listen...

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Casting Now: Individuals with Undiagnosed Medical Conditions

February 1, 2019 11:19 pm

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Update:  Nina Kane, a casting associate, called to let us know that this documentary series for television has officially been picked up and will start filming soon. Nina...

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Szajnuk Update: Ava Szajnuk and our Undiagnosed Rare Disease

November 17, 2017 3:37 am

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  Ava Szajnuk’s CT on November 16, 2017: Technology is beautiful. Ava recently fell and hit her head in gym class. She suffered a head injury and a...

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