{"id":46366,"date":"2025-03-21T10:18:38","date_gmt":"2025-03-21T14:18:38","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=46366"},"modified":"2025-08-23T17:13:33","modified_gmt":"2025-08-23T21:13:33","slug":"rare-disease-day-2025-a-chance-to-shine-a-light-on-erdheim-chester-disease","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/rare-disease-day-2025-a-chance-to-shine-a-light-on-erdheim-chester-disease\/","title":{"rendered":"D\u00eda de las Enfermedades Raras 2025: una oportunidad para dar a conocer la enfermedad de Erdheim-Chester"},"content":{"rendered":"

Cada a\u00f1o, el \u00faltimo d\u00eda de febrero, la comunidad internacional se une para celebrar\u00a0D\u00eda de las Enfermedades Raras<\/strong>\u2014una iniciativa fundamental que pone de relieve los retos a los que se enfrentan las personas que padecen enfermedades raras. El\u00a028 de febrero de 2025<\/strong>, la Alianza Mundial contra la Enfermedad de Erdheim-Chester (ECDGA) se enorgullece de sumarse a este movimiento mundial para dar a conocer\u00a0Enfermedad de Erdheim-Chester (ECD)<\/strong>\u00a0and the urgent need for greater research, diagnosis, and treatment advancements.<\/p>\n

ECD es un\u00a0c\u00e1ncer de sangre extremadamente raro<\/strong>\u00a0que afecta a varios \u00f3rganos, entre ellos los huesos, el coraz\u00f3n, el cerebro y los ri\u00f1ones. Debido a su rareza, muchos pacientes sufren\u00a0a\u00f1os de diagn\u00f3sticos err\u00f3neos<\/strong>\u00a0antes de recibir un diagn\u00f3stico y una atenci\u00f3n adecuados. Este a\u00f1o, el D\u00eda de las Enfermedades Raras supone una oportunidad para que la comunidad de personas con ECD se una, comparta sus historias y abogue por el cambio.<\/p>\n

\u00bfC\u00f3mo puedes ayudar a sensibilizar a la sociedad?<\/h3>\n
    \n
  1. Comparte tu historia<\/strong>\u00a0\u2013 Personal experiences are powerful. By sharing stories of those affected by ECD, we can help others understand the challenges of living with a rare disease and encourage early diagnosis.<\/li>\n
  2. Participa en las redes sociales<\/strong>\u00a0\u2013 Use Rare Disease Day 2025 as a platform to post about ECD, using official hashtags and tagging advocacy organizations to expand our reach.<\/li>\n
  3. Educar e informar<\/strong>\u00a0\u2013 Encourage friends, family, and healthcare professionals to learn more about ECD by directing them to the ECDGA website and Rare Disease Day resources.<\/li>\n
  4. Apoyo a la investigaci\u00f3n y a la recaudaci\u00f3n de fondos<\/strong>\u00a0\u2013 Donations and research funding are critical for developing new treatments. Consider supporting ECDGA\u2019s initiatives to help advance medical understanding of ECD.<\/li>\n
  5. Wear Zebra Stripes or Blue and Green<\/strong>\u00a0\u2013 Many rare disease organizations use the zebra as a symbol of rarity, while ECDGA\u2019s colors of blue and green represent hope and unity within our community.<\/li>\n<\/ol>\n

    S\u00e9 la voz de la comunidad de desarrollo infantil temprano<\/h3>\n

    El D\u00eda de las Enfermedades Raras es m\u00e1s que una simple fecha en el calendario: es una oportunidad para llamar la atenci\u00f3n a nivel mundial sobre enfermedades como la ECD, que a menudo pasan desapercibidas. Si tomamos medidas, podemos fomentar la comprensi\u00f3n, impulsar los esfuerzos de investigaci\u00f3n y garantizar que nadie tenga que afrontar la ECD en soledad.<\/p>\n

    Join us on\u00a028 de febrero de 2025<\/strong>, para dar a conocer la enfermedad de Erdheim-Chester. Visita\u00a0P\u00e1gina web de la ECDGA<\/a>\u00a0y\u00a0P\u00e1gina oficial del D\u00eda de las Enfermedades Raras<\/a>\u00a0\u00a1Para saber m\u00e1s y participar!<\/p>","protected":false},"excerpt":{"rendered":"

    Every year, on the last day of February, the global community comes together to recognize\u00a0Rare Disease Day\u2014a vital initiative that highlights the challenges faced by individuals living with rare conditions. […]<\/p>\n","protected":false},"author":20,"featured_media":44723,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","cybocfi_hide_featured_image":"","wds_primary_category":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[51],"tags":[],"class_list":["post-46366","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/46366","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/users\/20"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=46366"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/46366\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/44723"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=46366"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=46366"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=46366"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}