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Rejoignez l’Alliance mondiale ECD et des milliers de sympathisants de notre communauté pour éduquer les autres sur la Erdheim-Chester la maladie !
Nous pensons que la sensibilisation du public, et en particulier des professionnels de la santé, est cruciale pour un diagnostic précoce et des soins exceptionnels.
Merci pour vos efforts visant à attirer l’attention sur Erdheim-Chester La maladie pour plus de formation des médecins, plus de financement pour la recherche et plus d’espoir pour les familles qui se battent ! Nous vous remercions de votre engagement à aider ces patients et leurs familles à retrouver l’espoir !
ENSEMBLE NOUS POUVONS #ENDECD!
Devenez un champion de la sensibilisation de la communauté ECD
Un champion de la sensibilisation communautaire ( ECD ) est un sympathisant qui s’engage à sensibiliser les gens dans sa région, c’est tout ! Il peut s’agir d’activités visant à informer les personnes qui ne connaissent pas la maladie. Erdheim-Chester Il peut s’agir de toute activité visant à informer les personnes qui ne connaissent pas bien la maladie. Nous avons même un guide et du matériel de sensibilisation pour vous !
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/.
Journée des maladies rares
La communauté participe également à la journée annuelle des maladies rares, le dernier jour de février. Vous pouvez avoir un impact global pendant ces périodes, ou à n’importe quel moment de l’année, en sensibilisant et en recueillant du soutien pour les familles atteintes de maladies rares dans le monde entier. Erdheim-Chester Les familles touchées par les maladies rares dans le monde entier. La Journée des maladies rares a lieu chaque année le dernier jour du mois de février. Son principal objectif est de sensibiliser le grand public et les décideurs aux maladies rares et à leur impact sur la vie des patients.
La campagne vise principalement le grand public et cherche également à sensibiliser les décideurs politiques, les autorités publiques, les représentants de l’industrie, les chercheurs, les professionnels de la santé et toute personne ayant un intérêt réel pour les maladies rares.
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.
Soyez social
- Suivez-nous sur l’une de nos pages médias et participez à la conversation !
- Partagez l’information sur vos sites de médias sociaux en utilisant les hashtags #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.
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.
Ressources de sensibilisation
Voici quelques ressources intéressantes à utiliser pour la promotion de la sensibilisation.
Voici quelques ressources intéressantes pour faire passer le message à votre communauté, à vos amis, à votre famille, aux cabinets médicaux locaux et aux hôpitaux. Nous vous remercions de votre aide !
| 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. |
« Soyez le changement que vous voulez voir dans le monde… »
-Mahatma Gandhi