{"id":58727,"date":"2016-05-27T17:20:28","date_gmt":"2016-05-27T21:20:28","guid":{"rendered":"https:\/\/rarediseases.org\/nord-members-share-great-resources-for-er-visits-during-rareerchat\/"},"modified":"2022-12-01T11:58:05","modified_gmt":"2022-12-01T16:58:05","slug":"nord-members-share-great-resources-for-er-visits-during-rareerchat","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-members-share-great-resources-for-er-visits-during-rareerchat\/","title":{"rendered":"NORD Members Share Great Resources for ER Visits During #RareERChat"},"content":{"rendered":"

Emergency room visits are a fact of life for many people with rare diseases. And, when the patient is a child, these experiences can be especially stressful for the entire family. <\/span><\/p>\n

For that reason, NORD was delighted to host a tweetchat with Texas Children\u2019s Hospital \u2013 one of our nation\u2019s premier teaching hospitals — on \u201cNavigating the Pediatric ER.\u201d We saw this as an opportunity to address a topic of great importance to our members.<\/span><\/p>\n

As it turned out, the chat was very active and, in fact, was trending for much of the hour. It was gratifying to us to see how many NORD member organizations participated. It was even better to see the wonderful resources our members have developed to help families prepare for pediatric ER visits. <\/span><\/p>\n

Sample tweets included: <\/strong><\/p>\n

Breathe and realize everyone is doing their best. Your child\u2019s life is what matters and everyone is on the same team. \u2013Cure HHT<\/a><\/span><\/p>\n

Helpful hint for families: Have ER go bag. Fill it with comfortable items, medical records, so you can grab & go when needed.\u2013Hemophilia Federation<\/a><\/span><\/p>\n

Below are some of the resources that were shared by our members:<\/strong><\/p>\n

The United Mitochondrial Disease Foundation’s Pocket Emergency Card<\/p>\n

\u00a0The FPIES Foundation’s Smart Phone App<\/p>\n

Hemophilia Federation of America’s Emergency Room, Hospital, & Clinic Visits Toolkit<\/p>\n

Osteogenesis Imperfecta Foundation’s “Handle with Care” Poster<\/p>\n

The Mastocytosis Society, Inc.’s Emergency Room Protocol<\/a><\/p>\n

 <\/p>\n

Missed the chat? See the entire conversation here or on Twitter using #RareERChat.<\/a>
\nDo you have resources for ER visits with a rare disease? <\/em>
\nShare them in the comments section below.<\/em><\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Emergency room visits are a fact of life for many people with rare diseases. And, when the patient is a child, these experiences can be especially stressful for the entire … <\/p>\n

Continue reading “NORD Members Share Great Resources for ER Visits During #RareERChat”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"footnotes":""},"categories":[190,191,192],"tags":[1132,1139,1140,1141,516,1142,1138,1143,1135,603,363],"class_list":["post-58727","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-medical","category-patients-members","tag-rareerchat","tag-emergency-rom-visits","tag-emergency-room-protocol","tag-fpies-foundation","tag-hemophilia-federation-of-america","tag-hfa","tag-navigating-pediatric-er","tag-osteogenesis-imperfecta-foundation","tag-texas-childrens-hospital","tag-umdf","tag-united-mitochondrial-disease-foundation"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58727","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58727"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58727\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58727"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58727"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58727"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}