{"id":19549,"date":"2021-02-17T17:02:46","date_gmt":"2021-02-17T17:02:46","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/ecd-staging\/?p=19549"},"modified":"2026-08-19T07:08:41","modified_gmt":"2026-08-19T12:08:41","slug":"dia-de-las-enfermedades-raras-2021","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/2021-rare-disease-day\/","title":{"rendered":"D\u00eda de las Enfermedades Raras 2021"},"content":{"rendered":"

\u00bfQU\u00c9 ES EL D\u00cdA DE LAS ENFERMEDADES RARAS?<\/strong><\/h1>\n

28 de febrero de 2021<\/em>, se celebrar\u00e1 la 14.\u00aa edici\u00f3n del D\u00eda Internacional de las Enfermedades Raras, coordinada por EURORDIS. Ese d\u00eda y en los d\u00edas cercanos a \u00e9l, cientos de organizaciones de pacientes de pa\u00edses y regiones de todo el mundo llevar\u00e1n a cabo actividades de sensibilizaci\u00f3n.<\/p>\n

Aproximadamente 300 millones de personas (alrededor del 5% de la poblaci\u00f3n) padecen una enfermedad rara. De ese 5%, menos de 1.000 personas padecen la enfermedad de Erdheim-Chester en todo el mundo.<\/p>\n

\u00danete a la Alianza Global ECD para dar a conocer las enfermedades raras compartiendo tu experiencia con la ECD.<\/strong><\/p>\n

V\u00eddeo oficial del D\u00eda de las Enfermedades Raras\u00a0<\/a><\/p>\n

Encuentra m\u00e1s recursos y formas de sensibilizar a la poblaci\u00f3n en nuestra Corre la voz<\/a> p\u00e1gina web o en el P\u00e1gina web del D\u00eda de las Enfermedades Raras<\/a>.<\/p>\n

Comparte tu d\u00eda con nosotros en las redes sociales, etiquetando a @ECDGA en Facebook y utilizando el hashtag ##ECDawareness en cualquier red social. Te agradecer\u00edamos que tambi\u00e9n te pusieras en contacto con nosotros para que podamos publicar tu historia, cita, foto o entrada en las p\u00e1ginas de ECDGA en las redes sociales.<\/p>\n

Lee nuestro \u00faltimo testimonio de un paciente, publicado con motivo del D\u00eda de las Enfermedades Raras de este a\u00f1o: Un viaje espiritual a trav\u00e9s de la ECD<\/a><\/strong><\/p>\n

Comparte este folleto en tus redes sociales o por correo electr\u00f3nico <\/strong>\u00a1con tus contactos!<\/strong><\/p>\n

\"\"<\/a><\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

 <\/p>\n

Hagas lo que hagas en este D\u00eda de las Enfermedades Raras, \u00a1tu asociaci\u00f3n de apoyo est\u00e1 aqu\u00ed para acompa\u00f1arte en tu camino! \u00a1Gracias por lucir con orgullo tu lazo de las enfermedades raras!<\/strong><\/em><\/p>","protected":false},"excerpt":{"rendered":"

WHAT IS RARE DISEASE DAY? February 28, 2021, will be the 14th International Rare Disease Day coordinated by EURORDIS. On and around this day, hundreds of patient organizations from countries […]<\/p>\n","protected":false},"author":14,"featured_media":19553,"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":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[51,70],"tags":[55,101,83,54,59,53,58,56,69,57,82,52,75],"class_list":["post-19549","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","category-research-awareness","tag-advocacy","tag-awareness","tag-blood-cancer","tag-blood-disorder","tag-bone-pain","tag-cancer","tag-diabetes-insipidus","tag-erdheim-chester","tag-fatigue","tag-hairy-kidney","tag-rare-cancer","tag-rare-disease","tag-rare-disease-day"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/19549","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\/14"}],"replies":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/comments?post=19549"}],"version-history":[{"count":2,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/19549\/revisions"}],"predecessor-version":[{"id":175290,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/19549\/revisions\/175290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/19553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=19549"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=19549"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=19549"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}