WHAT IS RARE DISEASE DAY?

February 28, 2021, will be the 14th 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.  

Approximately 300 million people (about 5% of the population) suffer from a rare disease. Within that 5%, less than 1,000 people suffer from Erdheim-Chester Disease worldwide.  

Join the ECD Global Alliance in sharing awareness of rare diseases by sharing your experience with ECD.  

Official Rare Disease Day Video 

Find more resources and ways to raise awareness on our Spread the Word webpage or on the Rare Disease Day website.

Share your day with us on media, by tagging @ECDGA on Facebook and using #ECDawareness on any media site. We would appreciate it if you would also contact us to use your story, quote, photo, and/or post on ECDGA’s media pages.

Read our newest patient story, released for this year’s Rare Disease Day: A Spiritual Journey Through ECD

Share this flyer on your media pages or via email with your contacts!

 

 

 

 

 

 

 

 

Whatever you do for this Rare Disease Day, your advocacy group is here to support you in your journey! Thank you for carrying your rare ribbon with pride!