傳播資訊
加入 ECD 全球聯盟和我們成千上萬的社區支援者，向其他人宣傳 Erdheim-Chester 病！
我們相信，提高公眾，尤其是醫療專業人員的意識，對於早期診斷和特殊護理至關重要。
感謝您努力引起人們對 Erdheim-Chester 病的關注，以便對醫生進行更多教育，為研究提供更多資金，併為戰鬥的家庭帶來更多希望！我們感謝您致力於幫助這些患者及其家人找到希望！
我們可以一起 #ENDECD！
成為 ECD 社區意識宣導者
ECD 社區意識冠軍是致力於提高他們所在地區意識的支援者，就是這樣！這可能包括任何將 Erdheim-Chester 病資訊帶給可能不熟悉它的人的活動。我們甚至為您提供指南和宣傳材料！
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: https://www.bonfire.com/store/ecd-global-alliance/.
罕見病日
該社區還在 2 月的最後一天參加一年一度的罕見病日。您可以在這些時期或一年中的任何時候通過傳播對世界各地 Erdheim-Chester 病家庭的認識並獲得支援來產生全球影響。罕見病日在每年 2 月的最後一天舉行。罕見病日的主要目標是提高公眾和決策者對罕見病及其對患者生活影響的認識。
該活動主要針對公眾，還旨在提高政策制定者、公共機構、行業代表、研究人員、衛生專業人員以及任何對罕見病真正感興趣的人的認識。
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.
獲取社交
- 在我們的任何媒體頁面上關注我們並加入對話！
- 使用 #endECD #ECDAwareness 主題標籤在您的社交媒體網站上分享資訊。
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
Educate
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.
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.
意識資源
以下是一些可用於提高意識的優秀資源。
這裡有一些很好的資源，可以向您的社區、朋友、家人、當地醫療辦公室和醫院宣傳。感謝您的説明！
| Resource | Purpose/Uses |
|---|---|
| ECD Fact Cards | These cards give a short description of the disease and also list the website address. These are formatted to print in business card format. |
| General Fact Flyer | This informational flyer is easy to print and can be used to educate any population about ECD year-round. |
| 2020 Awareness Week Flyer | Print this flyer to post on your community bulletin boards or email a copy to medical institutions, friends, and family. |
| Informational Guide 4.5”x 9.5” | 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. (Fits in men’s shirt pocket.) |
| Proclamation Template Cover Letter | Use these templates to submit a request to your local city or state legislator to request the proclamation of ECD Awareness Week. |
| ECD Medical Brochure | Raise physician awareness with this brochure. Bring this pamphlet with you to all medical appointments, ECD-related or otherwise. |
| General 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. |
“成為你想在世界上看到的改變……”
-聖雄甘地