{"id":58936,"date":"2018-06-15T20:26:43","date_gmt":"2018-06-16T00:26:43","guid":{"rendered":"https:\/\/rarediseases.org\/nord-meets-with-hhs-secretary-azar-to-discuss-needs-of-rare-disease-patients\/"},"modified":"2018-06-15T20:26:43","modified_gmt":"2018-06-16T00:26:43","slug":"nord-meets-with-hhs-secretary-azar-to-discuss-needs-of-rare-disease-patients","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-meets-with-hhs-secretary-azar-to-discuss-needs-of-rare-disease-patients\/","title":{"rendered":"NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients"},"content":{"rendered":"<p><b>Washington, D.C., June 15, 2018\u2014<\/b><span style=\"font-weight: 400;\">On Wednesday, staff from the National Organization for Rare Disorders (NORD) met with Health and Human Services (HHS) Secretary Alex Azar to discuss the needs of rare disease patients. The meeting covered orphan drug innovation, growing patient involvement at the Food and Drug Administration (FDA), and the\u00a0mounting challenges of access to quality insurance coverage for rare disease patients. \u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">During the meeting, NORD addressed the unmet needs of rare disease patients. Specifically, NORD highlighted that only approximately 5 percent of rare diseases have an FDA-approved treatment, meaning that the majority of patients are still waiting for safe, effective treatments to be developed.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cWe thank Secretary Azar for the opportunity to discuss the needs of America\u2019s 30 million rare disease patients. \u00a0We value our conversation about how the Administration can take steps to promote access to safe, new treatments for our patients,\u201d said Peter L. Saltonstall, President and CEO of NORD.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The meeting reflects NORD\u2019s efforts to voice the needs of rare disease patients at the highest levels of government. \u00a0NORD is the leading independent nonprofit organization representing the 30 million Americans with rare diseases. Learn more about NORD\u2019s policy work and how to join its efforts at <\/span><a href=\"https:\/\/rareaction.org\/\" rel=\"nofollow noopener\" target=\"_blank\"><span style=\"font-weight: 400;\">rareaction.org<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Washington, D.C., June 15, 2018\u2014On Wednesday, staff from the National Organization for Rare Disorders (NORD) met with Health and Human Services (HHS) Secretary Alex Azar to discuss the needs of &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-meets-with-hhs-secretary-azar-to-discuss-needs-of-rare-disease-patients\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients&#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":[232,190],"tags":[1413,1438,239,1278,225,243,1610],"class_list":["post-58936","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-featured-news","tag-alex-azar","tag-health-and-human-services","tag-hhs","tag-national-organization-for-rare-disorders","tag-nord","tag-peter-l-saltonstall","tag-secretary-azar"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58936","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=58936"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58936\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58936"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58936"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58936"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}