We believe bringing awareness to the public, especially to medical professionals, is crucial to early diagnosis and exceptional care.<\/p>\n
Thank you for your efforts to bring attention to Erdheim-Chester Disease for more education to doctors, more funding for research, and more hope for the families fighting!\u00a0 We thank you for your commitment to helping these patients and their families find hope!<\/p>\n
<\/p>\n
TOGETHER WE CAN #ENDECD<\/span>!<\/h2>\n[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row column_structure=”3_4,1_4″ make_equal=”on” _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”3_4″ module_class=”ds-vertical-align” _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″]Become an ECD Community Awareness Champion<\/strong><\/em>
\nAn ECD Community Awareness Champion is a supporter that commits to raising awareness in their area, that\u2019s it!\u00a0 This could include any activities that bring information about Erdheim-Chester Disease to those that may not be familiar with it.\u00a0 You can hand out ECD brochures to medical professionals and others who might be interested or should know about ECD.[\/et_pb_text][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/request-a-brochure\/” button_text=”Get you Brochures Here” _builder_version=”4.27.5″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/ECD-Champion-X-Background-300×300-1.png” title_text=”ECD-Champion-X-Background-300×300″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row admin_label=”row” _builder_version=”4.16″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\nGet your community involved, too!<\/em><\/h5>\n\n- Yard Signs <\/strong>\u2013 request a graphic to bring to a local or online print shop and get your family and friends to spread them around their neighborhoods!<\/li>\n
- Ribbons<\/strong> \u2013 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.\u00a0 If you find large ribbons, these work great on your yard signs!<\/li>\n
- Share your story<\/strong> about life with ECD with the local news \u2013 your news outlet would be a great resource to make ECD known to the masses.\u00a0 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!<\/li>\n<\/ul>\n
![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2022\/07\/super-shirt-150x150.jpg\")
<\/strong><\/h3>\nAwareness Gear<\/em><\/h5>\nGrab the new ECD Super Support Squad shirt!\u00a0<\/strong>
<\/a>Choose from multiple styles and colors. The profits on shirt sales go to the ECDGA! International shipping is available. Tip: It\u2019s best to purchase your gear during an open campaign, reach out to our team for details.<\/p>\nVisit our T-shirt store here: https:\/\/www.bonfire.com\/store\/ecd-global-alliance\/<\/a>.<\/a><\/p>\n[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Rare Disease Day\u00a0<\/strong><\/h3>\nThe community also participates in the annual Rare Disease Day on the last day of February.\u00a0 You can make a global impact during these times, or any time of year, by spreading awareness and garnering support for Erdheim-Chester Disease families around the world.\u00a0 Rare Disease Day takes place on\u00a0the last day of February each year.\u00a0The main objective of Rare Disease Day is to\u00a0raise awareness\u00a0amongst the general public and decision-makers about\u00a0rare diseases and their impact on patients’ lives.<\/p>\n
The campaign targets primarily the general public and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.<\/p>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
How to Get Involved<\/strong><\/h3>\nWhat can you do to raise awareness?\u00a0 Whether you pick one or all of our suggestions, don\u2019t wait for someone else to raise awareness.\u00a0 If you care about someone with Erdheim-Chester Disease, then you are the best advocate to spread the word.\u00a0 By sharing your\u00a0powerful experiences and connections with ECD, you help make the future for patients and families brighter.<\/p>\n
<\/p>\n
Share Your Story<\/h4>\n\n- Write an article for rare disease advocacy publications like\u00a0RareDaily<\/a>.<\/li>\n
- Write to the editor of your local newspaper, radio, or television station about how ECD has affected you and your family.<\/li>\n
- Tell your experience to friends, family, and community members.<\/li>\n
- Make a video for YouTube or social sites telling the world why ECD awareness is important to you.<\/li>\n
- Use your email signature as an opportunity to hyperlink to a personal blog or the ECDGA website to increase your network\u2019s knowledge of ECD.<\/li>\n
- Find other ECD patient stories\u00a0here<\/a>.<\/li>\n<\/ul>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||6px|||” global_colors_info=”{}”]<\/p>\n
Get Social<\/h4>\n
[\/et_pb_text][et_pb_social_media_follow _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||13px|||” global_colors_info=”{}”][et_pb_social_media_follow_network social_network=”facebook” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#3b5998″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]facebook[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”twitter” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#000000″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]X[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”instagram” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#ea2c59″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]instagram[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”linkedin” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#007bb6″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]linkedin[\/et_pb_social_media_follow_network][\/et_pb_social_media_follow][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
\n- Follow us on any of our media pages and join the conversation!<\/li>\n
- Share information on your social media sites using the #endECD #ECDAwareness hashtags.<\/li>\n<\/ul>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”||3px|||” global_colors_info=”{}”]<\/p>\n
Host an Event<\/h4>\n
ECD Awareness Week, Rare Disease Day<\/a>, and World Cancer Day<\/a> are all great excuses to get your friends and families together to discuss the importance of ECD.\u00a0 There are several ways and types of activities that can be organized to generate awareness and potentially raise funds for ECD research.\u00a0 If you\u2019re planning on hosting an event, contact us for assistance or questions.\u00a0 Please send donations to ECD Global Alliance, P.O. 775, DeRidder, LA 70634 USA or go here<\/a>.<\/p>\nTell us what you have planned for ECD Awareness!\u00a0 Invite others to help spread the word and inspire others\u00a0to get out into their community. \u00a0Here are some event and activity ideas:<\/p>\n
\n- Organize an informative lecture<\/li>\n
- Meet with local or national authorities to discuss education for government-supported medical schools<\/li>\n
- Organize an awareness display at a local school or hospital<\/li>\n
- Bring ECD Awareness to a local school<\/li>\n
- Host a silent auction, bake sale, dine-and-donate, or athletic event<\/li>\n
- Participate in an event near you<\/li>\n
- Other\u00a0Fundraising Ideas<\/a>\u00a0and resources<\/li>\n<\/ul>\n
Educate<\/h4>\n
Your treating clinician may know about Erdheim-Chester Disease, but what about the rest of the hospital staff?\u00a0 Ask if you can leave physician brochures in the professional communication area.<\/p>\n
[\/et_pb_text][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/request-a-brochure\/” button_text=”Request a Brochure” _builder_version=”4.27.5″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Volunteer<\/h4>\n
Help the ECDGA raise awareness by volunteering your time to any one of our ongoing awareness projects \u2013 like reaching out to physicians to coordinate medical presentations on ECD, editing subtitling for ECD videos, or updating global ECD Facebook pages.\u00a0 Contact us about\u00a0volunteer<\/a>\u00a0opportunities.<\/p>\n[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_color=”#F2F2F2″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Awareness Resources<\/h2>\nHere are some great resources to use for the promotion of awareness.<\/h4>\n
Here are some great resources to get the word out to your community, friends, family, local medical offices, and hospitals.\u00a0 Thank you for your help!<\/p>\n\n
\nAn ECD Community Awareness Champion is a supporter that commits to raising awareness in their area, that\u2019s it!\u00a0 This could include any activities that bring information about Erdheim-Chester Disease to those that may not be familiar with it.\u00a0 You can hand out ECD brochures to medical professionals and others who might be interested or should know about ECD.[\/et_pb_text][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/request-a-brochure\/” button_text=”Get you Brochures Here” _builder_version=”4.27.5″ _module_preset=”default” hover_enabled=”0″ global_colors_info=”{}” sticky_enabled=”0″][\/et_pb_button][\/et_pb_column][et_pb_column type=”1_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_image src=”https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2025\/03\/ECD-Champion-X-Background-300×300-1.png” title_text=”ECD-Champion-X-Background-300×300″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row admin_label=”row” _builder_version=”4.16″ background_size=”initial” background_position=”top_left” background_repeat=”repeat” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.16″ custom_padding=”|||” global_colors_info=”{}” custom_padding__hover=”|||”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Get your community involved, too!<\/em><\/h5>\n\n- Yard Signs <\/strong>\u2013 request a graphic to bring to a local or online print shop and get your family and friends to spread them around their neighborhoods!<\/li>\n
- Ribbons<\/strong> \u2013 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.\u00a0 If you find large ribbons, these work great on your yard signs!<\/li>\n
- Share your story<\/strong> about life with ECD with the local news \u2013 your news outlet would be a great resource to make ECD known to the masses.\u00a0 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!<\/li>\n<\/ul>\n
<\/strong><\/h3>\nAwareness Gear<\/em><\/h5>\nGrab the new ECD Super Support Squad shirt!\u00a0<\/strong>
<\/a>Choose from multiple styles and colors. The profits on shirt sales go to the ECDGA! International shipping is available. Tip: It\u2019s best to purchase your gear during an open campaign, reach out to our team for details.<\/p>\nVisit our T-shirt store here: https:\/\/www.bonfire.com\/store\/ecd-global-alliance\/<\/a>.<\/a><\/p>\n[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Rare Disease Day\u00a0<\/strong><\/h3>\nThe community also participates in the annual Rare Disease Day on the last day of February.\u00a0 You can make a global impact during these times, or any time of year, by spreading awareness and garnering support for Erdheim-Chester Disease families around the world.\u00a0 Rare Disease Day takes place on\u00a0the last day of February each year.\u00a0The main objective of Rare Disease Day is to\u00a0raise awareness\u00a0amongst the general public and decision-makers about\u00a0rare diseases and their impact on patients’ lives.<\/p>\n
The campaign targets primarily the general public and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.<\/p>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
How to Get Involved<\/strong><\/h3>\nWhat can you do to raise awareness?\u00a0 Whether you pick one or all of our suggestions, don\u2019t wait for someone else to raise awareness.\u00a0 If you care about someone with Erdheim-Chester Disease, then you are the best advocate to spread the word.\u00a0 By sharing your\u00a0powerful experiences and connections with ECD, you help make the future for patients and families brighter.<\/p>\n
<\/p>\n
Share Your Story<\/h4>\n\n- Write an article for rare disease advocacy publications like\u00a0RareDaily<\/a>.<\/li>\n
- Write to the editor of your local newspaper, radio, or television station about how ECD has affected you and your family.<\/li>\n
- Tell your experience to friends, family, and community members.<\/li>\n
- Make a video for YouTube or social sites telling the world why ECD awareness is important to you.<\/li>\n
- Use your email signature as an opportunity to hyperlink to a personal blog or the ECDGA website to increase your network\u2019s knowledge of ECD.<\/li>\n
- Find other ECD patient stories\u00a0here<\/a>.<\/li>\n<\/ul>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||6px|||” global_colors_info=”{}”]<\/p>\n
Get Social<\/h4>\n
[\/et_pb_text][et_pb_social_media_follow _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||13px|||” global_colors_info=”{}”][et_pb_social_media_follow_network social_network=”facebook” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#3b5998″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]facebook[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”twitter” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#000000″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]X[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”instagram” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#ea2c59″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]instagram[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”linkedin” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#007bb6″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]linkedin[\/et_pb_social_media_follow_network][\/et_pb_social_media_follow][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
\n- Follow us on any of our media pages and join the conversation!<\/li>\n
- Share information on your social media sites using the #endECD #ECDAwareness hashtags.<\/li>\n<\/ul>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”||3px|||” global_colors_info=”{}”]<\/p>\n
Host an Event<\/h4>\n
ECD Awareness Week, Rare Disease Day<\/a>, and World Cancer Day<\/a> are all great excuses to get your friends and families together to discuss the importance of ECD.\u00a0 There are several ways and types of activities that can be organized to generate awareness and potentially raise funds for ECD research.\u00a0 If you\u2019re planning on hosting an event, contact us for assistance or questions.\u00a0 Please send donations to ECD Global Alliance, P.O. 775, DeRidder, LA 70634 USA or go here<\/a>.<\/p>\nTell us what you have planned for ECD Awareness!\u00a0 Invite others to help spread the word and inspire others\u00a0to get out into their community. \u00a0Here are some event and activity ideas:<\/p>\n
\n- Organize an informative lecture<\/li>\n
- Meet with local or national authorities to discuss education for government-supported medical schools<\/li>\n
- Organize an awareness display at a local school or hospital<\/li>\n
- Bring ECD Awareness to a local school<\/li>\n
- Host a silent auction, bake sale, dine-and-donate, or athletic event<\/li>\n
- Participate in an event near you<\/li>\n
- Other\u00a0Fundraising Ideas<\/a>\u00a0and resources<\/li>\n<\/ul>\n
Educate<\/h4>\n
Your treating clinician may know about Erdheim-Chester Disease, but what about the rest of the hospital staff?\u00a0 Ask if you can leave physician brochures in the professional communication area.<\/p>\n
[\/et_pb_text][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/request-a-brochure\/” button_text=”Request a Brochure” _builder_version=”4.27.5″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Volunteer<\/h4>\n
Help the ECDGA raise awareness by volunteering your time to any one of our ongoing awareness projects \u2013 like reaching out to physicians to coordinate medical presentations on ECD, editing subtitling for ECD videos, or updating global ECD Facebook pages.\u00a0 Contact us about\u00a0volunteer<\/a>\u00a0opportunities.<\/p>\n[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_color=”#F2F2F2″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Awareness Resources<\/h2>\nHere are some great resources to use for the promotion of awareness.<\/h4>\n
Here are some great resources to get the word out to your community, friends, family, local medical offices, and hospitals.\u00a0 Thank you for your help!<\/p>\n\n
<\/strong><\/h3>\nAwareness Gear<\/em><\/h5>\nGrab the new ECD Super Support Squad shirt!\u00a0<\/strong>
<\/a>Choose from multiple styles and colors. The profits on shirt sales go to the ECDGA! International shipping is available. Tip: It\u2019s best to purchase your gear during an open campaign, reach out to our team for details.<\/p>\nVisit our T-shirt store here: https:\/\/www.bonfire.com\/store\/ecd-global-alliance\/<\/a>.<\/a><\/p>\n[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Rare Disease Day\u00a0<\/strong><\/h3>\nThe community also participates in the annual Rare Disease Day on the last day of February.\u00a0 You can make a global impact during these times, or any time of year, by spreading awareness and garnering support for Erdheim-Chester Disease families around the world.\u00a0 Rare Disease Day takes place on\u00a0the last day of February each year.\u00a0The main objective of Rare Disease Day is to\u00a0raise awareness\u00a0amongst the general public and decision-makers about\u00a0rare diseases and their impact on patients’ lives.<\/p>\n
The campaign targets primarily the general public and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.<\/p>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
How to Get Involved<\/strong><\/h3>\nWhat can you do to raise awareness?\u00a0 Whether you pick one or all of our suggestions, don\u2019t wait for someone else to raise awareness.\u00a0 If you care about someone with Erdheim-Chester Disease, then you are the best advocate to spread the word.\u00a0 By sharing your\u00a0powerful experiences and connections with ECD, you help make the future for patients and families brighter.<\/p>\n
<\/p>\n
Share Your Story<\/h4>\n\n- Write an article for rare disease advocacy publications like\u00a0RareDaily<\/a>.<\/li>\n
- Write to the editor of your local newspaper, radio, or television station about how ECD has affected you and your family.<\/li>\n
- Tell your experience to friends, family, and community members.<\/li>\n
- Make a video for YouTube or social sites telling the world why ECD awareness is important to you.<\/li>\n
- Use your email signature as an opportunity to hyperlink to a personal blog or the ECDGA website to increase your network\u2019s knowledge of ECD.<\/li>\n
- Find other ECD patient stories\u00a0here<\/a>.<\/li>\n<\/ul>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||6px|||” global_colors_info=”{}”]<\/p>\n
Get Social<\/h4>\n
[\/et_pb_text][et_pb_social_media_follow _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||13px|||” global_colors_info=”{}”][et_pb_social_media_follow_network social_network=”facebook” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#3b5998″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]facebook[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”twitter” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#000000″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]X[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”instagram” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#ea2c59″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]instagram[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”linkedin” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#007bb6″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]linkedin[\/et_pb_social_media_follow_network][\/et_pb_social_media_follow][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
\n- Follow us on any of our media pages and join the conversation!<\/li>\n
- Share information on your social media sites using the #endECD #ECDAwareness hashtags.<\/li>\n<\/ul>\n
[\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”||3px|||” global_colors_info=”{}”]<\/p>\n
Host an Event<\/h4>\n
ECD Awareness Week, Rare Disease Day<\/a>, and World Cancer Day<\/a> are all great excuses to get your friends and families together to discuss the importance of ECD.\u00a0 There are several ways and types of activities that can be organized to generate awareness and potentially raise funds for ECD research.\u00a0 If you\u2019re planning on hosting an event, contact us for assistance or questions.\u00a0 Please send donations to ECD Global Alliance, P.O. 775, DeRidder, LA 70634 USA or go here<\/a>.<\/p>\nTell us what you have planned for ECD Awareness!\u00a0 Invite others to help spread the word and inspire others\u00a0to get out into their community. \u00a0Here are some event and activity ideas:<\/p>\n
\n- Organize an informative lecture<\/li>\n
- Meet with local or national authorities to discuss education for government-supported medical schools<\/li>\n
- Organize an awareness display at a local school or hospital<\/li>\n
- Bring ECD Awareness to a local school<\/li>\n
- Host a silent auction, bake sale, dine-and-donate, or athletic event<\/li>\n
- Participate in an event near you<\/li>\n
- Other\u00a0Fundraising Ideas<\/a>\u00a0and resources<\/li>\n<\/ul>\n
Educate<\/h4>\n
Your treating clinician may know about Erdheim-Chester Disease, but what about the rest of the hospital staff?\u00a0 Ask if you can leave physician brochures in the professional communication area.<\/p>\n
[\/et_pb_text][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/request-a-brochure\/” button_text=”Request a Brochure” _builder_version=”4.27.5″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Volunteer<\/h4>\n
Help the ECDGA raise awareness by volunteering your time to any one of our ongoing awareness projects \u2013 like reaching out to physicians to coordinate medical presentations on ECD, editing subtitling for ECD videos, or updating global ECD Facebook pages.\u00a0 Contact us about\u00a0volunteer<\/a>\u00a0opportunities.<\/p>\n[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_color=”#F2F2F2″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n
Awareness Resources<\/h2>\nHere are some great resources to use for the promotion of awareness.<\/h4>\n
Here are some great resources to get the word out to your community, friends, family, local medical offices, and hospitals.\u00a0 Thank you for your help!<\/p>\n\n
Grab the new ECD Super Support Squad shirt!\u00a0<\/strong> Visit our T-shirt store here: https:\/\/www.bonfire.com\/store\/ecd-global-alliance\/<\/a>.<\/a><\/p>\n [\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n The community also participates in the annual Rare Disease Day on the last day of February.\u00a0 You can make a global impact during these times, or any time of year, by spreading awareness and garnering support for Erdheim-Chester Disease families around the world.\u00a0 Rare Disease Day takes place on\u00a0the last day of February each year.\u00a0The main objective of Rare Disease Day is to\u00a0raise awareness\u00a0amongst the general public and decision-makers about\u00a0rare diseases and their impact on patients’ lives.<\/p>\n The campaign targets primarily the general public and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals, and anyone who has a genuine interest in rare diseases.<\/p>\n [\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n What can you do to raise awareness?\u00a0 Whether you pick one or all of our suggestions, don\u2019t wait for someone else to raise awareness.\u00a0 If you care about someone with Erdheim-Chester Disease, then you are the best advocate to spread the word.\u00a0 By sharing your\u00a0powerful experiences and connections with ECD, you help make the future for patients and families brighter.<\/p>\n <\/p>\n [\/et_pb_text][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||6px|||” global_colors_info=”{}”]<\/p>\n [\/et_pb_text][et_pb_social_media_follow _builder_version=”4.27.4″ _module_preset=”default” custom_margin=”||13px|||” global_colors_info=”{}”][et_pb_social_media_follow_network social_network=”facebook” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#3b5998″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]facebook[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”twitter” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#000000″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]X[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”instagram” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#ea2c59″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]instagram[\/et_pb_social_media_follow_network][et_pb_social_media_follow_network social_network=”linkedin” _builder_version=”4.27.4″ _module_preset=”default” background_color=”#007bb6″ global_colors_info=”{}” follow_button=”off” url_new_window=”on”]linkedin[\/et_pb_social_media_follow_network][\/et_pb_social_media_follow][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n [\/et_pb_text][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” custom_padding=”||3px|||” global_colors_info=”{}”]<\/p>\n ECD Awareness Week, Rare Disease Day<\/a>, and World Cancer Day<\/a> are all great excuses to get your friends and families together to discuss the importance of ECD.\u00a0 There are several ways and types of activities that can be organized to generate awareness and potentially raise funds for ECD research.\u00a0 If you\u2019re planning on hosting an event, contact us for assistance or questions.\u00a0 Please send donations to ECD Global Alliance, P.O. 775, DeRidder, LA 70634 USA or go here<\/a>.<\/p>\n Tell us what you have planned for ECD Awareness!\u00a0 Invite others to help spread the word and inspire others\u00a0to get out into their community. \u00a0Here are some event and activity ideas:<\/p>\n Your treating clinician may know about Erdheim-Chester Disease, but what about the rest of the hospital staff?\u00a0 Ask if you can leave physician brochures in the professional communication area.<\/p>\n [\/et_pb_text][et_pb_button button_url=”https:\/\/www.erdheim-chester.org\/request-a-brochure\/” button_text=”Request a Brochure” _builder_version=”4.27.5″ _module_preset=”default” locked=”off” global_colors_info=”{}”][\/et_pb_button][et_pb_text _builder_version=”4.27.5″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n Help the ECDGA raise awareness by volunteering your time to any one of our ongoing awareness projects \u2013 like reaching out to physicians to coordinate medical presentations on ECD, editing subtitling for ECD videos, or updating global ECD Facebook pages.\u00a0 Contact us about\u00a0volunteer<\/a>\u00a0opportunities.<\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.27.4″ _module_preset=”default” background_color=”#F2F2F2″ global_colors_info=”{}”][et_pb_row _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.27.4″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n Here are some great resources to get the word out to your community, friends, family, local medical offices, and hospitals.\u00a0 Thank you for your help!<\/p>\n\n
<\/a>Choose from multiple styles and colors. The profits on shirt sales go to the ECDGA! International shipping is available. Tip: It\u2019s best to purchase your gear during an open campaign, reach out to our team for details.<\/p>\nRare Disease Day\u00a0<\/strong><\/h3>\n
How to Get Involved<\/strong><\/h3>\n
Share Your Story<\/h4>\n
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Get Social<\/h4>\n
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Host an Event<\/h4>\n
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Educate<\/h4>\n
Volunteer<\/h4>\n
Awareness Resources<\/h2>\n
Here are some great resources to use for the promotion of awareness.<\/h4>\n
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<\/strong><\/em>Become an ECD Community Awareness Champion<\/strong><\/em>\r\n\r\nAn ECD Community Awareness Champion is a supporter that commits to raising awareness in their area, that's it! This could include any activities that bring information about Erdheim-Chester Disease to those that may not be familiar with it. We even have a guide and awareness materials for you! \r\n![\"\"](\"https:\/\/www.erdheim-chester.org\/wp-content\/uploads\/2018\/08\/Facebook-Icon.png\"){kind=icon}
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