ECD Awareness Week

The Erdheim-Chester Disease Global Alliance is geared up for the 3rd Annual ECD Awareness Week on September 10-15!  We believe bringing awareness to the public, 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 families around the world.

Awareness Gear & Resources

• Awareness Week – ECD Fact Flyer
• Awareness Fact Cards – Printable
• Awareness Week Announcement Avatar
• Awareness Week Dates Facebook Cover

NEW – Order a new ECD awareness T-shirt to add to your gear!  Choose from six styles and multiple colors. The profits on shirt sales go to the ECDGA!

Featured Stories

Medical Miracle – The Result of a Mother’s Love

I Am Rare – What I want others to know about my experience with Erdheim-Chester Disease

Fighting Rare Disease as a Family – What one UK family faced with Erdheim-Chester Disease

Get Involved!

What can you do to help?  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.

SHARE YOUR STORY

• 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 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 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 and resources

EDUCATE

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!

VOLUNTEER  

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