ECD Awareness Week

September 11-16, 2017Square Graphic for General Use/Avatar

As the Erdheim-Chester Disease Global Alliance rallies the ECD community for the third ECD Awareness Week on September 11 – 16, we believe bringing awareness to the public and especially to medical professionals is crucial.  You can make a global impact this ECD Awareness Week by spreading awareness and garnering support for Erdheim-Chester Disease.


It’s not too late to get involved this #ECDAwareness week. Whether you pick one or all of our suggestions, whatever you do, 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.

Ways to Raise Erdheim-Chester Disease Awareness

Share Your Story

  • Take a quick survey to help the ECDGA share the patient voice during the week! Don’t forget a photo!
  • Write an article for rare disease advocacy publications like RareDaily and The Mighty.
  • Write to the editor of your local newspaper, radio, or television stations about what #ECDAwareness week means to you.
  • Tell your experience to friends, family, and community members.
  • Make a video telling the world why #ECDAwareness 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.
  • Share your photos, videos, and experiences with the ECDGA to help raise awareness on our website, social media outlets, and other media opportunities. Contact us with submissions or inquiries.
  • Find examples here.Screen Shot 2017-08-15 at 8.10.41 PM

Post on Media

  • Follow us!  Instagram    Facebook      Twitter     Rareconnect       LinkedIn
  • Use this avatar for your profiles or add a ribbon border to your profile photo as shown by following this link!
  • Share information on your social media sites using the #ECDAwareness handle.

Host an Event  #ECDAwareness week is a great excuse 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.

    Tell us what you have planned for ECD Awareness Week! Invite others to attend, 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 #ECDAwareness week 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

Make a Visit  Stop by your area hospitals, medical centers, and clinics and request permission to post the 2017 ECD Awareness flyers. Awareness Flyer

Connect One-on-One  Meet briefly with physicians in your area to explain ECD and provide resources available to educate medical professionals.

Giveaway Educational Material  Your treating clinician may know about Erdheim-Chester Disease, but what about the rest of the office and patients? Ask if you can leave patient brochures in the waiting room or physician brochures in the professional communication area.  See additional resources below!

Join the ECDGA  Join today to help us get the word out about how many people are really affected by ECD.  Join us HERE!

Proclaim #ECDAwareness Week  Use our ready-made proclamation template to write to your local or national government authority to proclaim the official #ECDAwareness week.
Proclamation Template with Cover Letter

Donate Your Time  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 medical presentation 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 4, 2017

Contact Us

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

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