It’s not too early to start planning 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 want to help fight Erdheim-Chester Disease, then you are the best advocate to spread the word.
Top 10 Ways to Raise Erdheim-Chester Disease Awareness
1.Write a Letter
It isn’t uncommon that ECD patients see several medical professionals prior to receiving an ECD diagnosis. Write a letter to those doctors who couldn’t diagnose you. Share your story, where you are today, and offer resources for education. Here is a Letter to Your Doctor Template created to help you on with this project.
2. Make a Visit
Stop by your area hospitals, medical centers, and clinics and ask to post the ECDGA’s 2016 #ECDAwareness posters or flyers offering quick facts for patients and physicians about Erdheim-Chester Disease. A medical poster sized 18 x 24 inches is available upon request. Medical Flyer
3. Connect One-on-One
While you’re there, see if there are any doctors available for a brief 5 to 10-minute meeting with you. You can take this opportunity to explain ECD and share resources available to educate medical professionals.
4. 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 “Patient Brochure and Medical Brochure” and “Shirt Pocket Guide“.
5. Join the ECDGA
If you haven’t already registered with Erdheim-Chester Disease Global Alliance you’re missing out on the latest developments in ECD studies and treatment, as well as making a meaningful impact in breakthrough research opportunities. Join today to help us get the word out about how many people are really affected by and care about ECD. Join us HERE!
6. Have a Party
#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 a fundraiser, contact us for assistance or questions. Please send donations to ECD Global Alliance, P.O. 775, DeRidder, LA 70634 USA.
Event and Activity Ideas
- Organize an informative lecture
- Meeting with local or national authorities discussing 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
7. Share Your Story
- Write an article for rare disease advocacy publications like RareDaily and The Mighty.
- Tell your experience to friends, family, and community members.
- Make a video telling the world why #ECDAwareness is important to you.
- Write an article for rare disease advocacy publications like RareDaily and the Mighty. Or, write a letter to the editor of your local newspaper, radio, or television stations about what #ECDAwareness week means 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.
8. Post on Media
- Participate in the conversation during #ECDAwareness week on social media. Share information about #ECDAwareness week on your social media sites with the #ECDAwareness handle.
- Engage on Facebook by liking the ECD Global Alliance official page, view our timeline and take part in the discussion by posting. Create artwork to commemorate the week and share it with us on Facebook.
- Re-tweet us on Twitter and use the hashtag #ECDAwareness.
- Update your social media profile pictures to the official #ECDAwareness Avatar graphic for the week
9. 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 Cover Letter Proclamation Template
10. 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.
Share your story with your local news, radio, or newspapers to help spread the word about ECD awareness week and to help others begin to understand the struggles of a person living with this disease while inspiring others to keep fighting. Contact us to post your published story here. See other patient stories for inspiration.
Here are some great resources to use for the promotion of ECD Awareness Week.
Help us get the word out to your community, friends, family, and local doctors and hospitals. Thank you for your help!
| Resource |
Purpose/Uses |
| Awareness Avatar |
Use this graphic to highlight Awareness Week by using it for your profile picture on social media. |
| Awareness Flyer
Medical Awareness Flyer
Awareness Poster
Medical Awareness Poster* |
The 2016 ECD Awareness Week flyers and posters can be posted on bulletins anywhere in your community or local hospital. They can be distributed by hand or emailed out to friends and family, businesses, hospitals, physicians, etc. *Please contact us for the medical poster file. |
| Proclamation Cover Letter
Proclamation Template |
Use these templates to submit a request to your local city or state legislator to request the proclamation of ECD Awareness Week in 2016. |
| Email Signature Graphic |
Add some awareness to your emails. Download this graphic to your computer as a photo and insert it under your email signature to easily advertise ECD Awareness week every time you send out messages. |
| Shirt Pocket Guide |
This double sided document is a great fact list to add to your awareness campaign. This size document fits easily into a man’s shirt pocket, making it easier to hold onto. |
| ECD Fact Cards |
These cards give a short description of the disease and also the website address. These are formatted to print in business card format. |
| Medical Brochure |
Raise physician awareness with this brochure. Bring this pamphlet with you to all medical appointments, ECD related or otherwise. |
| Patient Brochure |
Share information about this disease and the organization with your friends, family and community. |
| Letter to Your Doctor Template |
Did your journey start out with a doctor that was unable to diagnose your ECD? Write them a letter to give an update and offer education about your disease. |
Schedule of Events for #ECDAwareness Week 2016
Tell us what you have planned for ECD Awareness Week to have it listed here. Invite others to attend, help spread the word and inspire others to get out into their community.
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