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April 29, 2023 8:00 am
0What 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....
April 26, 2023 8:00 am
0For 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...
March 23, 2023 9:00 am
0What 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....
April 29, 2022 8:30 am
0Rare 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...
June 15, 2019 12:00 pm
25June 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...
February 28, 2019 9:27 pm
7Jazz 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) –...
February 19, 2019 12:00 pm
19HB211, 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...
February 13, 2019 12:19 pm
12Action 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...
February 1, 2019 11:19 pm
16Update: 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...
November 17, 2017 3:37 am
3Ava 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...