{"id":8552,"date":"2020-03-24T15:01:40","date_gmt":"2020-03-24T15:01:40","guid":{"rendered":"https:\/\/www.erdheim-chester.org\/?p=8552"},"modified":"2025-08-23T17:13:43","modified_gmt":"2025-08-23T21:13:43","slug":"vinculos-comunitarios-durante-la-pandemia-de-covid-19","status":"publish","type":"post","link":"https:\/\/www.erdheim-chester.org\/es\/community-connections-during-covid-19\/","title":{"rendered":"V\u00ednculos comunitarios durante la pandemia de COVID-19"},"content":{"rendered":"

El objetivo de nuestro blog es manteneros al d\u00eda <\/span>nuestros socios <\/span>con informaci\u00f3n importante que puede <\/span>aff<\/span>afectan a la vida cotidiana de los pacientes con ECD<\/span> y sus familias<\/span>. Intentamos facilitar esta informaci\u00f3n con la ayuda de un<\/span>y<\/span> orientaci\u00f3n de nuestro <\/span>de confianza <\/span>profesionales sanitarios. <\/span>A pagar<\/span> debido al aumento de los casos de COVID-19 en todo el mundo y a la necesidad de que todos nuestros profesionales sanitarios est\u00e9n en primera l\u00ednea<\/span> <\/span>En este sentido, las entradas de nuestro blog se limitar\u00e1n a las capacidades y los conocimientos del equipo de la ECDGA. <\/span> <\/span><\/p>\n

 <\/span>Esta semana, mientras todo el mundo practica el distanciamiento social<\/span>,<\/span> nos enteramos de un poco m\u00e1s<\/span>\u2013<\/span>en profundidad sobre la importancia de no <\/span>pr\u00e1cticamente desconectados unos de otros<\/span>. <\/span> <\/span><\/p>\n

 <\/span>Admitting to yourself about your diagnosis can be very difficult. It can be even harder <\/span>hablar de ello con la familia, los amigos y los compa\u00f1eros de trabajo. <\/span> <\/span>La Alianza Global ECD est\u00e1 aqu\u00ed para ofrecerte apoyo e informaci\u00f3n, as\u00ed como para defender tus intereses.<\/span>, lo que puede facilitar un poco esas conversaciones<\/span>.<\/span> <\/span><\/p>\n

 <\/span>Aunque tu enfermedad sea poco frecuente, \u00a1ten por seguro que no est\u00e1s solo! La ECDGA ofrece numerosas opciones que permiten a los pacientes, las familias y los cuidadores reunirse, comunicarse y encontrar esperanza. Estas otras familias se convertir\u00e1n en amigos, aliados, una red de apoyo e incluso un lugar donde desahogarte cuando hayas tenido un mal d\u00eda. Te animamos a que compartas el <\/span>grande y <\/span>peque\u00f1as victorias <\/span>\u00a1entre ellos!<\/span> <\/span> <\/span><\/p>\n

 <\/span>Formas de ponerse en contacto con la Alianza Global para el Desarrollo de la Primera Infancia (ECD)<\/span> familia\u2026<\/span> <\/span><\/p>\n

 <\/span>Equipo de la ECDGA <\/span><\/b>Correo electr\u00f3nico<\/span><\/b>s<\/span><\/b>: <\/span> <\/span><\/p>\n

Support@erdheim-chester.org<\/span><\/a> <\/span><\/p>\n

Jessica.Corkran@erdheim-chester.org<\/span><\/a> <\/span><\/p>\n

Chesnee.Green@erdheim-chester.org<\/span><\/a> <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Redes locales<\/span><\/b>:<\/span><\/b> <\/span><\/p>\n

 <\/span>La Alianza Global para el Desarrollo de la Primera Infancia <\/span>puede <\/span>proporcionar <\/span>pacientes y cuidadores con <\/span>Datos de contacto de las personas de tu zona<\/span>\u00e1rea de... t<\/span>que han aceptado que su informaci\u00f3n se comparta con otros miembros. Env\u00eda un correo electr\u00f3nico a Chesnee o a Jessica para obtener m\u00e1s informaci\u00f3n (consulta las direcciones de correo electr\u00f3nico<\/span>(v\u00e9ase m\u00e1s arriba).<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Redes sociales<\/span><\/b>:<\/span><\/b> <\/span><\/p>\n

 <\/span>Facebook<\/span><\/i><\/b>: <\/span>https:\/\/www.facebook.com\/ErdheimChesterDisease<\/span><\/a> <\/span><\/p>\n

*This is the ECDGA\u2019s Facebook page that is updated with the most recent information available including all current events, publications, studies and trials, and so much more. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Grupo de Facebook<\/span><\/i><\/b>: <\/span>https:\/\/www.facebook.com\/groups\/784637751599933\/<\/span><\/a> <\/span><\/p>\n

 <\/span>*Este es el grupo privado de la ECDGA*<\/span>. If you are a current member of the ECDGA you can access to this group. In this group you have the opportunity to speak openly with other members about ECD. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Twitter<\/span><\/i><\/b>: <\/span>https:\/\/twitter.com\/ECDGA<\/span><\/a> <\/span><\/p>\n

*This is the ECDGA\u2019s Twitter page that is updated with the most recent information available including all current events, publications, studies and trials, and so much more. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

YouTube<\/span><\/i><\/b>: <\/span>https:\/\/www.youtube.com\/channel\/UCYR3skRhqAFWC5PTOGv34JQ<\/span><\/a> <\/span><\/p>\n

*Esto es el<\/span> oficial<\/span> Canal de YouTube de la ECDGA <\/span>canal<\/span>. Here you will find informative videos about ECD, the Founder of the ECD Global Alliance, and videos from annual events (including medical professionals from around the world). <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

LinkedIn<\/span><\/i><\/b>:<\/span> <\/span>https:\/\/www.linkedin.com\/company\/erdheim-chester-disease-global-alliance-npo<\/span><\/a> <\/span><\/p>\n

*Nuestro perfil de LinkedIn <\/span>a<\/span>ccount is our professional profile that is also updated with the most recent information available including all current events, publications, studies and trials, and <\/span>Todo lo relacionado con el \u00e1mbito m\u00e9dico que pueda resultar de inter\u00e9s para los profesionales<\/span>.<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Instagram<\/span><\/i><\/b>: <\/span>https:\/\/www.instagram.com\/erdheim_chester\/?hl=en<\/span><\/a> <\/span><\/p>\n

*Esto es el <\/span>o<\/span>P\u00e1gina oficial de Instagram de la ECDGA. Debido a las caracter\u00edsticas de Instagram, la informaci\u00f3n es limitada<\/span>d<\/span>,<\/span> pero hay enlaces disponibles<\/span> en nuestra p\u00e1gina de perfil<\/span>. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

RareConnect<\/span><\/i><\/b>: <\/span>https:\/\/www.rareconnect.org\/en\/login?next=\/en\/community\/erdheim-chester-disease<\/span><\/a> <\/span><\/p>\n

*La ECDGA cuenta con un <\/span>RareConnect<\/span> profile. This site is updated with the most recent information available including all current events, publications, studies and trials, <\/span>etc.<\/span>. Es ideal para aquellas personas que hablan un idioma distinto del ingl\u00e9s y que pueden tener dificultades para comprender algunos contenidos. La informaci\u00f3n que se ofrece en esta p\u00e1gina web se traducir\u00e1 a tu idioma nativo. <\/span>by a human volunteer <\/span>para mayor claridad. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

 <\/span>En directo por Internet <\/span><\/b>Chat:<\/span><\/b> <\/span><\/p>\n

 <\/span>Apoyo al paciente<\/span><\/i><\/b> \u2013 <\/span>Chatzy<\/span>: <\/span>http:\/\/www.chatzy.com\/427437211406<\/span><\/a> <\/span><\/p>\n

*Este chat se celebra cada semana, los s\u00e1bados a las 15:00, hora est\u00e1ndar del Este. Aunque esa es la hora \u201cfija\u201d, la sala de chat est\u00e1 siempre abierta. <\/span> <\/span><\/p>\n

 <\/span><\/p>\n

Apoyo a los cuidadores<\/span><\/i><\/b> <\/span>\u2013<\/span> <\/span> <\/span><\/p>\n

*Correo electr\u00f3nico <\/span>support@erdheim-chester.org<\/span><\/a> para ponerte en contacto con el responsable de nuestro equipo de cuidadores y recibir una invitaci\u00f3n para la pr\u00f3xima sesi\u00f3n de chat para cuidadores.<\/span> <\/span><\/p>\n

 <\/span><\/p>\n

\u00bfHas utilizado alguna de estas formas de comunicaci\u00f3n? \u00bfCu\u00e1l es tu favorita? <\/span>\u00bfDe qu\u00e9 otras formas te gustar\u00eda estar en contacto?<\/span> <\/span><\/h4>","protected":false},"excerpt":{"rendered":"

The intent behind our blog is to update our members with important information that can affect the daily lives of ECD patients and their families. We try to provide this information with the assistance […]<\/p>\n","protected":false},"author":14,"featured_media":8553,"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":[67,51],"tags":[83,80,81,84,77,56,82,52],"class_list":["post-8552","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-community-support","category-news","tag-blood-cancer","tag-caregiver","tag-communication","tag-corona-virus","tag-covid-19","tag-erdheim-chester","tag-rare-cancer","tag-rare-disease"],"_links":{"self":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/8552","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=8552"}],"version-history":[{"count":0,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/posts\/8552\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media\/8553"}],"wp:attachment":[{"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/media?parent=8552"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/categories?post=8552"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.erdheim-chester.org\/es\/wp-json\/wp\/v2\/tags?post=8552"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}