Posts tagged ‘Undiagnosed Rare Disease’

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Watch the #UndiagnosedDay Presentation by Ava Zanik (Szajnuk), Undiagnosed Rare Advocate

April 29, 2023 4:36 pm

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“Imagine that you only get three years of good health and they are the three years you don’t really remember because you were too young.” – Ava Szajnuk...

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Watch Gina Zanik (Szajnuk) on #UndiagnosedDay and the Challenges Faced by Patients | VibeCast Episode 9

April 29, 2023 10:00 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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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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Asia Skye Atwater

August 29, 2022 8:00 am

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Hi. my name is Alicia Atwater and I’m fundraising for my niece Asia Atwater’s funeral expenses. Fundraiser for Season Atwater by Alicia Simons Atwater : Asia Skye Atwater...

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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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Undiagnosed Rare Disease Day on April 29th, 2019!

April 23, 2019 12:00 pm

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Join us to honor the Undiagnosed Rare Disease Community in April! All rare diseases were once undiagnosed. Today marks the first day of RUN’s Undiagnosed Rare Disease Day...

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Watch our #RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group

April 17, 2019 12:00 pm

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In 2018, RUN partnered with the University of Utah School of Medicine’s Pediatric Medicine Interest Group for an hour of experiencing what it is like to live with...

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#RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group

March 25, 2019 12:00 pm

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Do you know what it is like to live with a rare or an undiagnosed rare disease? In 2018, RUN partnered with the University of Utah School of...

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Utah HB435 Passed The House of Representatives!

March 5, 2019 12:00 pm

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Update: Senator David Buxton is supporting HB435 in the Senate March 5th, 2019 at 7:30p UPDATE: HB435, Undiagnosed Children Insurance Coverage, passed the Utah House of Representatives unanimously...

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RUN Educational Series: Speaking Opportunity

March 5, 2019 10:00 am

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Have you participated in a clinical trial and are open to sharing your experience at a future RUN Educational Series event on clinical trials? If you are a...

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