ECD Awareness Week is September 8–14, 2025, and we need YOU to help raise awareness and show the world what it means to be part of the ECD family.
Awareness Week is important because Erdheim-Chester Disease (ECD) is so rare that many people— even in the medical field—have never heard of it. By taking part in this global effort, you’re helping improve early diagnosis, increasing understanding, and bringing vital attention to the needs of our community.
Here are two simple ways you can get involved:
1. Share ECD Brochures with Local Medical Professionals
You can help educate doctors, nurses, and clinics in your area by giving them an official ECD brochure.
📄 Download the Medical Outreach Flyer.
This flyer includes easy instructions on how to request brochures and share them.
You can raise both awareness and support for ECD by organizing a simple event in your community. Big or small, it all makes a difference!
📄 Download the ABC’s of ECD Fundraising Flyer.
We’ve listed fun and easy ideas to get you started—from Awareness Walks & 5ks to Zebra Themed Awareness Campaigns!
When we all take action—no matter how small—it adds up to something BIG.
Let’s raise our voices together this week! Whatever you do to support ECD Awareness Week, please post about it on social media and/or send us a picture to post!
With gratitude,
The ECD Global Alliance Team
🌐 www.erdheim-chester.org