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 and their impact on patients’ lives.
RUN is officially a Friend of Rare Disease Day!
Photos from Rare Disease Day State House event sponsored by the National Organization for Rare Disorders (NORD) on February 28, 2018
ABOUT THE DAY
WHAT?
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.
Why?
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
WHO?
Rare Disease Day events are down to hundreds of patient organizations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organizations who group together several rare disease organizations in a given country or region. Click on a logo of one of the National Alliances to go to their website.
WHERE?
The campaign started as a European event and has progressively become a world phenomenon, with the USA joining in 2009 and participation in over 90 countries all over the world in both 2017 and 2018. Hundreds of cities continue to take part in Rare Disease Day and we hope even more will join in 2019.
Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.
WHEN?
The first Rare Disease Day was celebrated in 2008 on 29 February, a ‘rare’ date that happens only once every four years. Ever since then, Rare Disease Day has taken place on the last day of February, a month known for having a ‘rare’ number of days.
On rarediseaseday.org you can find information about the thousands of events happening around the world on the last day of February. If you are planning an event, register your event details on the Post your Event page to get your event listed on the site!
#SHOWYOURRARE FOR RARE DISEASE DAY
How?
It’s simple!
1. Paint your face using brightly coloured face paints
2. Pose for a selfie or group photo
3. Post the picture on social media using the hashtags #ShowYourRare and #RareDiseaseDay
Share an image on your own or with your friends, family or colleagues!