{"id":58640,"date":"2015-09-29T13:34:43","date_gmt":"2015-09-29T17:34:43","guid":{"rendered":"https:\/\/rarediseases.org\/nord-issues-statement-applauding-the-approval-of-ensuring-access-to-clinical-trials-act\/"},"modified":"2015-09-29T13:34:43","modified_gmt":"2015-09-29T17:34:43","slug":"nord-issues-statement-applauding-the-approval-of-ensuring-access-to-clinical-trials-act","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-issues-statement-applauding-the-approval-of-ensuring-access-to-clinical-trials-act\/","title":{"rendered":"NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act"},"content":{"rendered":"<p>The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on yesterday\u2019s <a href=\"https:\/\/www.congress.gov\/bill\/114th-congress\/senate-bill\/139\" target=\"_blank\" rel=\"noopener nofollow\">approval<\/a> of the Ensuring Access to Clinical Trials Act (S. 139) in the United States House of Representatives.<\/p>\n<p><em>The House of Representatives echoed the U.S. Senate and showed its commitment to 1 in 10 Americans and their families by passing the Ensuring Access to Clinical Trials Act (S.139).\u00a0 By passing S. 139, the House voted to remove income-related barriers to participation in clinical trials and toward developing much-needed treatments for the 7,000 known rare diseases, only a few hundred of which currently have FDA-approved treatments. <\/em><\/p>\n<p><em>Today, 30 million people and their families have added hope that their tremendous unmet medical needs are one step closer to being addressed. Studying one rare disease can often lead to understanding of other rare diseases, as well as understanding of more common diseases. <\/em><\/p>\n<p><em>As the Ensuring Access to Clinical Trials Act moves to the President\u2019s desk, we close in on eliminating the challenges of rare diseases and to stopping them from altering and ending the lives of too many Americans much too soon.\u00a0 NORD is proud to have supported this bill and to have advocated for its passage with the Cystic Fibrosis Foundation, Muscular Dystrophy Association, and many others in the rare disease community<\/em><em>.<\/em><\/p>\n<p>Peter L. Saltonstall<br \/>\nPresident and CEO, National Organization for Rare Disorders (NORD)<\/p>\n<p><strong><em>Read more about the Ensuring Access to Clinical Trials Act <a href=\"https:\/\/rarediseases.org\/ensuring-access-to-clinical-trials-act-passes-senate\/\" target=\"_blank\" rel=\"noopener\">here<\/a>.<\/em><\/strong><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on yesterday\u2019s approval of the Ensuring Access to Clinical Trials &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-issues-statement-applauding-the-approval-of-ensuring-access-to-clinical-trials-act\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00abNORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"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],"tags":[446,644,646,243],"class_list":["post-58640","post","type-post","status-publish","format-standard","hentry","category-advocacy","tag-clinical-trials","tag-ensuring-access-to-clinical-trials-act","tag-iact","tag-peter-l-saltonstall"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58640","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58640"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58640\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58640"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58640"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58640"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}