{"id":58720,"date":"2016-05-12T21:06:58","date_gmt":"2016-05-13T01:06:58","guid":{"rendered":"https:\/\/rarediseases.org\/nord-to-hold-rare-diseases-roundtable\/"},"modified":"2016-05-12T21:06:58","modified_gmt":"2016-05-13T01:06:58","slug":"nord-to-hold-rare-diseases-roundtable","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-to-hold-rare-diseases-roundtable\/","title":{"rendered":"NORD to Hold Rare Diseases Roundtable"},"content":{"rendered":"<p><a href=\"https:\/\/rarediseases.org\/nord-hold-rare-diseases-roundtable\/nord_rareimpactawards2016_program_page6\/\" rel=\"attachment wp-att-26048\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft wp-image-26048 size-medium\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2016\/05\/NORD_RareImpactAwards2016_Program_Page6-300x300.jpg\" alt=\"NORD_RareImpactAwards2016_Program_Page6\" width=\"300\" height=\"300\" \/><\/a>The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community.<\/p>\n<p>The roundtable will be held at the Warner Theatre in Washington, D.C., where NORD\u2019s 2016 Rare Impact Awards are scheduled to take place that evening.\u00a0 Participants include the 2016 Rare Impact Award <a href=\"https:\/\/rarediseases.org\/tag\/rare-impact-award-honorees\/\" target=\"_blank\" rel=\"noopener\">honorees<\/a> and represent patients, parents and advocacy leaders; researchers; doctors; legislators; a leading bioethicist; and pharmaceutical executives. NORD president and CEO, Peter L. Saltonstall, will participate and Mary Dunkle, vice president of educational initiatives at NORD, will moderate the conversation.<\/p>\n<p>\u201cWe have seen many accomplishments in the past year for rare diseases, with a record number of new orphan drugs approved and several legislative advances, including cost sharing legislation in several states,\u201d said Saltonstall.\u00a0 \u201cOur goal is to help drive further progress.\u201d<\/p>\n<p>There are 30 million Americans\u20141 in 10 people, most of whom are children\u2014who are affected by approximately 7,000 rare diseases.\u00a0 Ninety-five percent of rare diseases have no treatment.<\/p>\n<p>NORD will live-tweet the event using the hashtag #RareImpact and plans to publish follow-up reports based on the discussion.<\/p>\n<p>Media are invited to attend and must register in advance by contacting Jennifer Huron at <a href=\"mailto:jhuron@rarediseases.org\">jhuron@rarediseases.org<\/a> or 203.304.7258.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community. &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-to-hold-rare-diseases-roundtable\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD to Hold Rare Diseases Roundtable&#8221;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":12193,"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":[232,503,210,191,192,504,193],"tags":[1004,261,243,930],"class_list":["post-58720","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-events","category-industry","category-medical","category-patients-members","category-press-releases","category-research","tag-rareimpact","tag-mary-dunkle","tag-peter-l-saltonstall","tag-rare-impact-awards"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58720","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=58720"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58720\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/12193"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58720"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58720"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58720"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}