{"id":59068,"date":"2019-10-29T21:58:42","date_gmt":"2019-10-30T01:58:42","guid":{"rendered":"https:\/\/rarediseases.org\/nords-rare-action-network-mobilized-for-a-successful-hill-day\/"},"modified":"2019-10-29T21:58:42","modified_gmt":"2019-10-30T01:58:42","slug":"nords-rare-action-network-mobilized-for-a-successful-hill-day","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nords-rare-action-network-mobilized-for-a-successful-hill-day\/","title":{"rendered":"NORD&#8217;s Rare Action Network Mobilized for a Successful Hill Day"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">On the heels of the 2019 <\/span><a href=\"https:\/\/www.nordsummit.org\" rel=\"nofollow noopener\" target=\"_blank\"><span style=\"font-weight: 400;\">Rare Diseases and Orphan Products Breakthrough Summit<\/span><\/a><span style=\"font-weight: 400;\">, NORD\u2019s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states met with 30 congressional offices to talk about a host of issues confronted by the rare disease community, including:\u00a0\u00a0<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">The importance and impact of the Orphan Drug Act;<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">The need for strong newborn screening programs and swift reauthorization of the Newborn Screening Saves Lives Act (H.R.2507, S.2158);\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">The challenges associated with coverage of medical nutrition;\u00a0<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">The \u201cdiagnostic odyssey\u201d endured by rare disease patients; and<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">The need to ensure affordable, adequate and accessible healthcare coverage.<\/span><\/li>\n<\/ul>\n<p style=\"text-align: center;\">[carousel id=&#8221;41834&#8243;]\n<p><span style=\"font-weight: 400;\">\u201cNORD\u2019s RAN Volunteer State Ambassadors help give a voice to the rare disease community,\u201d said Rachel Sher, Vice President of Policy and Regulatory Affairs at NORD.\u00a0 \u201cBy bravely and effectively telling their stories to members of Congress and their staff, these Ambassadors made an invaluable contribution towards improving the lives of those living with rare diseases.\u201d\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD\u2019s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nords-rare-action-network-mobilized-for-a-successful-hill-day\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD&#8217;s Rare Action Network Mobilized for a Successful Hill Day&#8221;<\/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":[232,503,190],"tags":[357,236,2099,1278,2098,225,262,526],"class_list":["post-59068","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-events","category-featured-news","tag-capitol-hill","tag-congress","tag-diagnostic-odyssey","tag-national-organization-for-rare-disorders","tag-newborn-screening-saves-lives-act","tag-nord","tag-orphan-drug-act","tag-rare-action-network"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59068","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=59068"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59068\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59068"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59068"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59068"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}