Spre budskapet

Bli med ECD Global Alliance og tusenvis av våre støttespillere i samfunnet for å opplyse andre om Erdheim-Chester sykdom!

Vi mener at bevisstgjøring av allmennheten, og spesielt helsepersonell, er avgjørende for tidlig diagnostisering og eksepsjonell behandling.

Takk for din innsats for å rette oppmerksomheten mot Erdheim-Chester Sykdom for mer utdanning til leger, mer midler til forskning og mer håp for familiene som kjemper! Vi takker deg for ditt engasjement for å hjelpe disse pasientene og deres familier med å finne håp!

SAMMEN KAN VI #ENDECD!

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/.

Dagen for sjeldne sykdommer

Samfunnet deltar også i den årlige Rare Disease Day den siste dagen i februar. Du kan gjøre en global innsats i disse periodene, eller når som helst i løpet av året, ved å spre bevissthet og samle støtte til familier med sjeldne Erdheim-Chester familier med sjeldne sykdommer over hele verden. Rare Disease Day finner sted den siste dagen i februar hvert år. Hovedformålet med Rare Disease Day er å øke bevisstheten blant allmennheten og beslutningstakere om sjeldne sykdommer og deres innvirkning på pasientenes liv.

Kampanjen retter seg først og fremst mot allmennheten, men har også som mål å øke bevisstheten blant beslutningstakere, offentlige myndigheter, representanter for industrien, forskere, helsepersonell og alle som har en genuin interesse for sjeldne sykdommer.

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.

Bli sosial

• Følg oss på noen av mediesidene våre og bli med i samtalen!
• Del informasjon på sosiale medier ved å bruke emneknaggene #endECD #ECDAwareness.

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.

• Hematologist
• Endocrinologist
• Pathologist

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.