{"id":58837,"date":"2017-05-31T19:10:04","date_gmt":"2017-05-31T23:10:04","guid":{"rendered":"https:\/\/rarediseases.org\/nord-releases-statement-on-orphan-drug-assessment-pricing-summit\/"},"modified":"2017-05-31T19:10:04","modified_gmt":"2017-05-31T23:10:04","slug":"nord-releases-statement-on-orphan-drug-assessment-pricing-summit","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-releases-statement-on-orphan-drug-assessment-pricing-summit\/","title":{"rendered":"NORD Releases Statement on Orphan Drug Assessment &#038; Pricing Summit"},"content":{"rendered":"<p><span style=\"font-weight: 400;\"><b>Washington, D.C.,\u00a0May 31, 2017\u2014<\/b>NORD released the following statement in advance of today\u2019s \u201cOrphan Drug Assessment and Pricing Summit\u201d held by the Institute for Clinical and Economic Review (ICER):<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cWe are pleased to participate in ICER\u2019s \u2018Orphan Drug Assessment and Pricing Summit\u2019, and look forward to providing the rare disease patient\u2019s viewpoint on the importance of orphan drugs. Most of all, we are eager to provide our perspective on the importance of the Orphan Drug Act, and the incentives within, in bringing life-improving, often life-saving, treatments to individuals with rare diseases.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">We view value assessments, and other health economic tools for measuring the value of therapies, as potentially valuable ways to inform patients and physicians on the best therapy for their unique circumstances. However, we are concerned that when used inappropriately, or even recklessly, value assessments of orphan drugs could result in a harmful withdrawal of access to these critically important therapies. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">Individuals with rare diseases deserve the same access to life saving therapies as everyone else. We will continue to fight for this basic right, and engage with ICER and all those in the value assessment community, to ensure individuals with rare diseases are not punished by these endeavors.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Please stay tuned for NORD\u2019s comments on ICER\u2019s \u201cAssessing the Effectiveness and Value of Drugs for Rare Conditions\u201d. In addition, read our <\/span><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2014\/11\/NORD-Comments-on-Proposed-Changes-to-ICERs-Framework.pdf\"><span style=\"font-weight: 400;\">comments on ICER\u2019s proposed updated of their value assessment<\/span><\/a><span style=\"font-weight: 400;\"> as well as our <\/span><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2014\/11\/NORD-ICER-Patient-Participation-Guide-Comments.pdf\"><span style=\"font-weight: 400;\">comments on ICER\u2019s \u201cPatient Participating Guide\u201d<\/span><\/a><span style=\"font-weight: 400;\">. \u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Washington, D.C.,\u00a0May 31, 2017\u2014NORD released the following statement in advance of today\u2019s \u201cOrphan Drug Assessment and Pricing Summit\u201d held by the Institute for Clinical and Economic Review (ICER): \u201cWe are &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-releases-statement-on-orphan-drug-assessment-pricing-summit\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Releases Statement on Orphan Drug Assessment &#038; Pricing Summit&#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],"tags":[269,1298,263,928],"class_list":["post-58837","post","type-post","status-publish","format-standard","hentry","category-featured-news","category-press-releases","tag-cost-of-orphan-drugs","tag-icer","tag-orphan-drugs","tag-press-release"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58837","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=58837"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58837\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58837"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58837"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58837"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}