{"id":59217,"date":"2020-11-19T14:13:59","date_gmt":"2020-11-19T19:13:59","guid":{"rendered":"https:\/\/rarediseases.org\/nord-releases-report-on-the-state-of-rare-disease-diagnosis-care-and-treatment-in-america-over-three-decades\/"},"modified":"2020-11-19T14:13:59","modified_gmt":"2020-11-19T19:13:59","slug":"nord-releases-report-on-the-state-of-rare-disease-diagnosis-care-and-treatment-in-america-over-three-decades","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-releases-report-on-the-state-of-rare-disease-diagnosis-care-and-treatment-in-america-over-three-decades\/","title":{"rendered":"NORD Releases Report on the State of Rare Disease Diagnosis, Care and Treatment in America Over Three Decades"},"content":{"rendered":"<p><b><span data-contrast=\"auto\">Washington, DC\u2014November 19, 2020<\/span><\/b><b><span data-contrast=\"auto\">:<\/span><\/b><span data-contrast=\"auto\">\u00a0Today, the National Organization for Rare Disorders (NORD\u00ae) published<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">a\u00a0<\/span><span data-contrast=\"auto\">comprehensive report<\/span><i><span data-contrast=\"auto\">\u00a0<\/span><\/i><span data-contrast=\"auto\">through\u00a0<\/span><span data-contrast=\"auto\">its<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">RareInsights<\/span><span data-contrast=\"auto\">\u2122 initiative:<\/span><span data-contrast=\"auto\">\u00a0<\/span><strong><i>Barriers\u00a0<\/i><i>to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis<\/i><\/strong><span data-contrast=\"auto\">.\u00a0<\/span><span data-contrast=\"auto\">As part of<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">a<\/span><span data-contrast=\"auto\">n<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">ongoing\u00a0<\/span><span data-contrast=\"auto\">mission<\/span><span data-contrast=\"auto\">\u00a0to\u00a0<\/span><span data-contrast=\"auto\">generate evidence and data t<\/span><span data-contrast=\"auto\">o<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">advance<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">our collective\u00a0<\/span><span data-contrast=\"auto\">understanding of the rare disease patient experience<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">NORD<\/span><span data-contrast=\"auto\">\u00a0conducted\u00a0<\/span><span data-contrast=\"auto\">two studies aimed at identifying\u00a0<\/span><span data-contrast=\"auto\">trends in<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">rare disease diagnosis, care and treatment in the United States. The\u00a0<\/span><span data-contrast=\"auto\">findings are outlined in a\u00a0<\/span><span data-contrast=\"auto\">new\u00a0<\/span><span data-contrast=\"auto\">report<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">that\u00a0<\/span><span data-contrast=\"auto\">looks comparatively\u00a0<\/span><span data-contrast=\"auto\">at survey data\u00a0<\/span><span data-contrast=\"auto\">from 1989 and 2019<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">NORD\u00a0<\/span><span data-contrast=\"auto\">examined<\/span><span data-contrast=\"auto\">\u00a0how barriers and facilitators have changed within the US health<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">care system,\u00a0<\/span><span data-contrast=\"none\">particularly\u00a0<\/span><span data-contrast=\"none\">in relation<\/span><span data-contrast=\"none\">\u00a0to the diagnostic odyssey,\u00a0<\/span><span data-contrast=\"none\">access to\u00a0<\/span><span data-contrast=\"none\">t<\/span><span data-contrast=\"none\">herapies<\/span><span data-contrast=\"none\">, financial impacts, and engagement with research and clinical trials.\u00a0<\/span><span data-contrast=\"none\">A snapshot of\u00a0<\/span><span data-contrast=\"none\">the<\/span><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">findings includes:<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<ul>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"none\">88% of people today reported that they would consider using\u00a0<\/span><span data-contrast=\"none\">an investigational drug or treatment, compared to 62% in 1989<\/span><span data-contrast=\"none\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"none\">16% of individuals today reported that they had already participated in a clinical trial for their rare disease<\/span><span data-contrast=\"none\">,<\/span><span data-contrast=\"none\">\u00a0compared to 12% in 1989<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"none\">17% of individuals\u00a0<\/span><span data-contrast=\"none\">today\u00a0<\/span><span data-contrast=\"none\">have already relocated or are considering relocat<\/span><span data-contrast=\"none\">ing<\/span><span data-contrast=\"none\">\u00a0to access care for their rare disease<\/span><span data-contrast=\"none\">,<\/span><span data-contrast=\"none\">\u00a0<\/span><span data-contrast=\"none\">versus<\/span><span data-contrast=\"none\"> 8% in 1989\u00a0<\/span><\/li>\n<li data-leveltext=\"\u00b7\" data-font=\"Symbol\" data-listid=\"1\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"none\">2% of respondents today reported that they did not have health<\/span><span data-contrast=\"none\">\u00a0care<\/span><span data-contrast=\"none\">\u00a0insurance<\/span><span data-contrast=\"none\">,<\/span><span data-contrast=\"none\">\u00a0versus 9% in 1989<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">The first survey<\/span><span data-contrast=\"auto\">, conducted\u00a0<\/span><span data-contrast=\"auto\">by NORD, was published\u00a0<\/span><span data-contrast=\"auto\">in\u00a0<\/span><span data-contrast=\"auto\">198<\/span><span data-contrast=\"auto\">9<\/span><span data-contrast=\"auto\">\u00a0on behalf of the National Commission on Orphan Diseases<\/span><span data-contrast=\"auto\">. The findings\u00a0<\/span><span data-contrast=\"auto\">reflected information collected\u00a0<\/span><span data-contrast=\"auto\">through voluntary telephone interviews\u00a0<\/span><span data-contrast=\"auto\">with<\/span><span data-contrast=\"auto\">\u00a0801\u00a0<\/span><span data-contrast=\"auto\">rare disease patients, family members and caregivers<\/span><span data-contrast=\"auto\">. Thirty years later, a follow-up s<\/span><span data-contrast=\"auto\">tudy<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">gathered voluntary responses from\u00a0<\/span><span data-contrast=\"auto\">1,108 individuals\u00a0<\/span><span data-contrast=\"auto\">via\u00a0<\/span><span data-contrast=\"auto\">a<\/span><span data-contrast=\"auto\">\u00a0web-based\u00a0<\/span><span data-contrast=\"auto\">survey<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">from<\/span><span data-contrast=\"auto\">\u00a0October 2019<\/span><span data-contrast=\"auto\">\u00a0through<\/span><span data-contrast=\"auto\">\u00a0March 2020.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">T<\/span><span data-contrast=\"auto\">he results from the 30-year follow-up report\u00a0<\/span><span data-contrast=\"auto\">will\u00a0<\/span><span data-contrast=\"auto\">be<\/span><span data-contrast=\"auto\">\u00a0used by NORD\u00a0<\/span><span data-contrast=\"auto\">to\u00a0<\/span><span data-contrast=\"auto\">help\u00a0<\/span><span data-contrast=\"auto\">inform future research, advocacy and engagement with\u00a0<\/span><span data-contrast=\"auto\">stakeholders in the rare disease co<\/span><span data-contrast=\"auto\">mmunity.\u00a0<\/span><span data-contrast=\"auto\">\u00a0\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201c<\/span><span data-contrast=\"auto\">F<\/span><span data-contrast=\"auto\">or nearly four decades<\/span><span data-contrast=\"auto\">,<\/span><span data-contrast=\"auto\">\u00a0NORD has<\/span><span data-contrast=\"auto\">\u00a0been\u00a0<\/span><span data-contrast=\"auto\">at the forefront of leadership for the rare community,\u201d said Vanessa Boulanger, MSc, NORD\u2019s Director of Research.<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">\u201cThis study is a prime example of the power of patient experience data and how NORD is positioned to leverage the work of those who came before us to drive new insights today<\/span><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\">\u201d\u00a0<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">Be sure to read the complete\u00a0<\/span><span data-contrast=\"auto\">RareInsights<\/span><span data-contrast=\"auto\">\u2122 report,\u00a0<\/span><span data-contrast=\"auto\">available for\u00a0<\/span><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2020\/11\/NRD-2088-Barriers-30-Yr-Survey-Report_FNL-2.pdf\"><span data-contrast=\"auto\">d<\/span><span data-contrast=\"auto\">o<\/span><span data-contrast=\"auto\">w<\/span><span data-contrast=\"auto\">n<\/span><span data-contrast=\"auto\">l<\/span><span data-contrast=\"auto\">o<\/span><span data-contrast=\"auto\">a<\/span><span data-contrast=\"auto\">d<\/span><span data-contrast=\"auto\">\u00a0<\/span><span data-contrast=\"auto\">h<\/span><span data-contrast=\"auto\">e<\/span><span data-contrast=\"auto\">r<\/span><span data-contrast=\"none\">e<\/span><\/a><span data-contrast=\"auto\">.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:1,&quot;335551620&quot;:1,&quot;335559739&quot;:160,&quot;335559740&quot;:259}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Washington, DC\u2014November 19, 2020:\u00a0Today, the National Organization for Rare Disorders (NORD\u00ae) published\u00a0a\u00a0comprehensive report\u00a0through\u00a0its\u00a0RareInsights\u2122 initiative:\u00a0Barriers\u00a0to Rare Disease Diagnosis, Care, and Treatment in the US: A 30-year Comparative Analysis.\u00a0As part of\u00a0an\u00a0ongoing\u00a0mission\u00a0to\u00a0generate evidence &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-releases-report-on-the-state-of-rare-disease-diagnosis-care-and-treatment-in-america-over-three-decades\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Releases Report on the State of Rare Disease Diagnosis, Care and Treatment in America Over Three Decades&#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":[190,504,193],"tags":[2580,2578,2579,2577,2576,1278,225,1623,1386],"class_list":["post-59217","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-press-releases","category-research","tag-and-treatment-in-the-us-a-30-year-comparative-analysis","tag-barriers-to-rare-disease-diagnosis","tag-care","tag-director-of-research","tag-national-commission-on-orphan-diseases","tag-national-organization-for-rare-disorders","tag-nord","tag-rareinsights","tag-vanessa-boulanger"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59217","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=59217"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59217\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59217"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59217"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59217"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}