Archive for the ‘Rare Disease Day’ Category
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Utah Rare Disease Day Event Recap Video by Recursion
For the video of the entire event visit Utah Rare Disease Day Event Video at Recursion Worldwide Headquarters For additional information visit Rare Disease Day in Utah. Contact information: Gina...
Utah Rare Disease Day Event Video at Recursion Worldwide Headquarters
Press Release Community Leaders Unite to Provide Support and Resources for Thousands of Utahns with Rare Diseases Declaration Governor Spencer J. Cox’s Rare Disease Day Declaration for February...
Governor Spencer J. Cox’s Declaration of Utah Rare Disease Day on February 28th, 2023
Rare-Disease-Day-Declaration-2023.pdf (bioutah.org) Contact information: Gina Szajnuk (Zanik)Co-founder and Executive DirectorRare and Undiagnosed Network (RUN) E: ginaszajnuk@gmail.comC: (310) 883-4353To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of...
Today is Rare Disease Day
Today is for raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. In the USA, it’s considered...
Governor Gary Herbert Declares Rare Disease Day in Utah on February 28th, 2019!
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases...
Upcoming RUN Involved Events and Projects
Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing...
RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
Utah: Rare Disease Day & Undiagnosed Rare Disease Day
Thank you to Governor Gary Herbert for both of his Declarations Rare Disease Day on February 28th & Undiagnosed Rare Disease Day on April 29th Rare Disease Day...
RUN’s NBA Initiative: 30 Rare & Undiagnosed Children invited for NBA Utah Jazz Appearance
Thank you Boris Diaw for donating 60 tickets through the player donation program to RUN! RUN is currently looking for thirty rare and undiagnosed children to make an...
