CALLING ALL ADVOCATES!

February 29, 2020, will be the 30th 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.  

The focus for Rare Disease Day 2020 is “Equity for the millions living with a rare disease!”  

• What hurdles have you faced when approaching healthcare? 
• What burdens affect your family when it comes to social interactions and activities? 
• What do you want the world to know about life with Erdheim-Chester Disease?

How will you show your stripes? Share with us on the media, by tagging @ECDGA on Facebook and #ECDawareness on any site. Contact us to put your story, quote, photo, and/or post on our public Facebook page.

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