Thank you to Governor Gary Herbert for both of his Declarations
Rare Disease Day on
Undiagnosed Rare Disease Day on
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 and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
February 28, 2018 will be the eleventh international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organizations from countries and regions all over the world will hold awareness-raising activities. The National Organization for Rare Disorders (NORD) is the official US sponsor of Rare Disease Day. Please use #RareDiseaseDay in all of your social media!
Learn more about Rare Disease Day at www.rarediseaseday.org
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. The main objective of Undiagnosed Day is to raise awareness for the undiagnosed rare disease community among the general public and decision-makers about undiagnosed rare diseases and their emotional, physical and financial impact on the lives of the patients and their families.
The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed rare diseases and the world of genetics. Since 80% of rare and undiagnosed rare diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed rare disease patients.
Help us raise awareness for the undiagnosed rare disease community by supporting Undiagnosed Day on April 29, 2018. Please use #UndiagnosedDay in all of your social media!
To learn more about Undiagnosed Rare Disease Day #UndiagnosedDay
Please feel free to contact RUN at [email protected] or (310) 883-4353 if you are interested in applying for a Declaration from your Governor for Undiagnosed Rare Disease Day on April 29th!