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Junte-se à ECD Global Alliance e a milhares de apoiadores de nossa comunidade para educar outras pessoas sobre Erdheim-Chester Doença!

Acreditamos que a conscientização do público, especialmente dos profissionais da área médica, é fundamental para o diagnóstico precoce e o atendimento excepcional.

Obrigado por seus esforços para chamar a atenção para a Erdheim-Chester Você é um dos principais responsáveis pelo desenvolvimento da doença, por mais educação para os médicos, mais financiamento para pesquisas e mais esperança para as famílias que lutam! Agradecemos a você por seu compromisso em ajudar esses pacientes e suas famílias a encontrar esperança!

JUNTOS PODEMOS #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/.

Dia das Doenças Raras

A comunidade também participa do Dia das Doenças Raras, comemorado anualmente no último dia de fevereiro. Você pode causar um impacto global durante esses períodos, ou em qualquer época do ano, divulgando a conscientização e angariando apoio para as famílias com doenças raras em todo o mundo. Erdheim-Chester Você pode causar um impacto global durante esses períodos ou em qualquer época do ano, divulgando a conscientização e obtendo apoio para as famílias com doenças raras em todo o mundo. O Dia das Doenças Raras ocorre no último dia de fevereiro de cada ano. O principal objetivo do Dia das Doenças Raras é conscientizar o público em geral e os tomadores de decisão sobre as doenças raras e seu impacto na vida dos pacientes.

A campanha tem como alvo principal o público em geral e também busca conscientizar os formuladores de políticas, autoridades públicas, representantes do setor, pesquisadores, profissionais da saúde e qualquer pessoa que tenha interesse genuíno em doenças raras.

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.

Obter Social

• Siga-nos em qualquer uma de nossas páginas de mídia e participe da conversa!
• Compartilhe informações em seus sites de mídia social usando as 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.

• 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.