It’s official! Thank you to Governor Spencer Cox for his declaration of April 29th to be Undiagnosed Rare Disease Day in Utah! #UndiagnosedDay
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 their families as well as to remember the ones we have lost. The Undiagnosed Day campaign seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed diseases and the world of genetics. Since 80% of undiagnosed diseases have identified genetic origins, it is imperative to raise awareness about the importance of genomics for undiagnosed disease patients. Undiagnosed Day is celebrated on several different days around the world, but every day is undiagnosed for the families living in the world of the unknown. RUN celebrates Undiagnosed Day on April 29th.
Contact information: Gina Zanik(Szajnuk)
Co-founder and Executive Director, Rare and Undiagnosed Network (RUN)
Vice Chair, Utah Rare Disease Day Council (RDAC)
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey To Read: “Push Through” by Ava Szajnuk RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”
