Join the ECD Global Alliance and thousands of our community supporters to educate others about Erdheim-Chester Disease! 

We believe bringing awareness to the public, especially to medical professionals, is crucial to early diagnosis and exceptional care.  

Thank you for your efforts to bring attention to Erdheim-Chester Disease for more education to doctors, more funding for research, and more hope for the families fighting!  We thank you for your commitment to helping these patients and their families find hope!



Become an ECD Community Awareness Champion

An ECD Community Awareness Champion is a supporter that commits to raising awareness in their area, that’s it!  This could include any activities that bring information about Erdheim-Chester Disease to those that may not be familiar with it.  We even have a guide and awareness materials for you! 

Request Your Kit  


Get your community involved, too!

  • Yard Signs – request a graphic to bring to a local or online print shop and get your family and friends to spread them around their neighborhoods!
  • Ribbons – find our zebra print ribbons online or at your local craft store. Making an awareness ribbon lapel pin for your care teams, friends, neighbors, or coworkers, is an easy way to share a little something with your peers to get the word out about ECD.  If you find large ribbons, these work great on your yard signs!
  • Share your story about life with ECD with the local news – your news outlet would be a great resource to make ECD known to the masses.  A personal call or visit to the studio soon could help you get a live spot for September – Giving you plenty of time to prepare!


Awareness Gear

Grab the new ECD Super Support Squad shirt! 
Choose from multiple styles and colors. The profits on shirt sales go to the ECDGA! International shipping is available. Tip: It’s best to purchase your gear during an open campaign, reach out to our team for details.

Visit our T-shirt store here:

Rare Disease Day 

The community also participates in the annual Rare Disease Day on the last day of February.  You can make a global impact during these times, or any time of year, by spreading awareness and garnering support for Erdheim-Chester Disease families around the world.  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 policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases. 

How to Get Involved

What can you do to raise awareness?  Whether you pick one or all of our suggestions, don’t wait for someone else to raise awareness.  If you care about someone with Erdheim-Chester Disease, then you are the best advocate to spread the word.  By sharing your powerful experiences and connections with ECD, you help make the future for patients and families brighter. 

Share Your Story

  • Write an article for rare disease advocacy publications like RareDaily.
  • Write to the editor of your local newspaper, radio, or television station about how ECD has affected you and your family.
  • Tell your experience to friends, family, and community members.
  • Make a video for YouTube or social sites telling the world why ECD awareness is important to you.
  • Use your email signature as an opportunity to hyperlink to a personal blog or the ECDGA website to increase your network’s knowledge of ECD.
  • Find other ECD patient stories here.

Get Social

  • Follow us on any of our media pages and join the conversation!
  • Share information on your social media sites using the #endECD #ECDAwareness hashtags.

Host an Event

ECD Awareness Week, Rare Disease Day, and World Cancer Day are all great excuses to get your friends and families together to discuss the importance of ECD.  There are several ways and types of activities that can be organized to generate awareness and potentially raise funds for ECD research.  If you’re planning on hosting an event, contact us for assistance or questions.  Please send donations to ECD Global Alliance, P.O. 775, DeRidder, LA 70634 USA or go here.

Tell us what you have planned for ECD Awareness!  Invite others to help spread the word and inspire others to get out into their community.  Here are some event and activity ideas:

  • Organize an informative lecture
  • Meet with local or national authorities to discuss education for government-supported medical schools
  • Organize an awareness display at a local school or hospital
  • Bring ECD Awareness to a local school
  • Host a silent auction, bake sale, dine-and-donate, or athletic event
  • Participate in an event near you
  • Other Fundraising Ideas and resources


Your treating clinician may know about Erdheim-Chester Disease, but what about the rest of the hospital staff?  Ask if you can leave physician brochures in the professional communication area.  Contact our team if you would like a brochure for the following specialties to aid in your awareness efforts. General brochures are also available. 


Help the ECDGA raise awareness by volunteering your time to any one of our ongoing awareness projects – like reaching out to physicians to coordinate medical presentations on ECD, editing subtitling for ECD videos, or updating global ECD Facebook pages.  Contact us about volunteer opportunities.

“Be the change you want to see in the world…”

-Mahatma Gandhi


Last updated: September 21, 2022

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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