{"id":58878,"date":"2017-11-28T16:20:15","date_gmt":"2017-11-28T21:20:15","guid":{"rendered":"https:\/\/rarediseases.org\/rare-disease-advocates-host-a-save-the-orphan-drug-tax-credit-rally\/"},"modified":"2017-11-28T16:20:15","modified_gmt":"2017-11-28T21:20:15","slug":"rare-disease-advocates-host-a-save-the-orphan-drug-tax-credit-rally","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/rare-disease-advocates-host-a-save-the-orphan-drug-tax-credit-rally\/","title":{"rendered":"Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally"},"content":{"rendered":"<p style=\"text-align: center;\"><em>Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases<\/em><\/p>\n<p><iframe loading=\"lazy\" title=\"Save the Orphan Drug Tax Credit Rally Day\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/jpNGffoFyGA?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture\" allowfullscreen><\/iframe><\/p>\n<p><strong>Washington, D.C., November 28, 2017 \u2013<\/strong> \u00a0Today, the National Organization for Rare Disorders (NORD) is hosting a <em>Save the Orphan Drug Tax Credit Rally<\/em> for the rare disease community in response to the tax reform bill being debated in Congress.\u00a0 Patients will meet with their Senators, ensuring that their needs are represented, as Congress seeks to repeal or weaken the Orphan Drug Tax Credit as part of the <em>Tax Cuts and Jobs Act<\/em>.<\/p>\n<p>\u201cThe current tax reform bill is bad for rare disease patients,\u201d said Peter L. Saltonstall, president and CEO of NORD, the leading independent nonprofit group representing people with rare diseases.\u00a0 \u201cSenators should listen to their constituents. The Orphan Drug Tax Credit saves lives, and our community needs the Orphan Drug Tax Credit for any hope of a treatment.\u201d<\/p>\n<p>People who cannot attend the rally are encouraged to participate in a virtual hill day by calling, emailing, and tweeting their Senators, as well as posting videos on social media using the hashtag #SaveOrphanDrugs.\u00a0 More information is available at <a href=\"https:\/\/rareaction.org\/saveorphandrugs\/\" target=\"_blank\" rel=\"noopener nofollow\">https:\/\/rareaction.org\/saveorphandrugs\/<\/a>.<\/p>\n<p>The Orphan Drug Tax Credit is critical to encouraging drug development for rare diseases.\u00a0 It is responsible for <a href=\"https:\/\/rarediseases.org\/assets\/files\/white-papers\/2015-06-17.nord-bio-ey-odtc.pdf\" target=\"_blank\" rel=\"noopener\">one-third<\/a> of all orphan products available on the market today.\u00a0 Without the Orphan Drug Tax Credit, <a href=\"https:\/\/rarediseases.org\/assets\/files\/white-papers\/2015-06-17.nord-bio-ey-odtc.pdf\" target=\"_blank\" rel=\"noopener\">33 percent<\/a> fewer therapies could be developed for rare disease patients going forward, which would be devastating to this community in which nearly 95 percent of the 7,000 rare diseases still do not have a treatment.<\/p>\n<p>\u201cThere are 30 million Americans with rare diseases \u2013 one-tenth of the population \u2013 of whom the vast majority are fighting for their very first treatment,\u201d said Saltonstall.\u00a0 \u201cWe are telling patients: you can use your voice to make a difference.\u201d<\/p>\n<p>Since the <em>Tax Cuts and Jobs Act<\/em> was released earlier this month, more than <a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2017\/11\/Orphan-Drug-Tax-Credit-2017-Letter-November.docx.pdf\" target=\"_blank\" rel=\"noopener\">200 nonpartisan patient groups<\/a> sent a letter to Congress urging policymakers to not repeal the Orphan Drug Tax Credit. \u00a0In addition, <a href=\"https:\/\/rarediseases.org\/statement-36-patient-organizations-opposition-senates-proposed-weakening-orphan-drug-tax-credit\/\" target=\"_blank\" rel=\"noopener\">36 patient organizations<\/a> implored the Senate to oppose the weakening of the credit, and <a href=\"https:\/\/rarediseases.org\/statement-91-patient-organizations-opposition-house-representatives-repeal-orphan-drug-tax-credit\/\" target=\"_blank\" rel=\"noopener\">91 patient organizations<\/a> condemned the House vote to repeal the credit.<\/p>\n<p style=\"text-align: center;\"><em>Get involved today! Take a moment to participate\u00a0and check out our resources by visiting our website at\u00a0<a href=\"https:\/\/rareaction.org\/saveorphandrugs\/\" target=\"_blank\" data-saferedirecturl=\"https:\/\/www.google.com\/url?hl=en&amp;q=https:\/\/r20.rs6.net\/tn.jsp?f%3D001Q1d0U6Syfq_cGNX6dZHczHenIU_sZugPHrBSr1tIBPmgnPVYiR_HzNTVn-BK9gg-mgnLflva7TRtMvdYHVVex1SlOmQkT4tDkh-2KBan6DQDR7qhtrD-NYf7TNBZkaiRP-is2fw4uqYfKO9g3qXzn3bRclsgnSifvD4IvfDZyaA%3D%26c%3DGL6v-Nt_0JgpnuhotvEr_XOiRqu9kDZU_AHLXv-vNxDrMhTQWpgY2g%3D%3D%26ch%3DQvC0WMqu5f6GqGWqTYPrrgkkIdR5i9_nKr7tQwbS9Hv_Nf1omVBX5A%3D%3D&amp;source=gmail&amp;ust=1511972210355000&amp;usg=AFQjCNFpMIqmG0KBlizPnnxT5Og4FY8uTw\" rel=\"noopener nofollow\">rareaction.org\/saveorphandrugs<\/a>.<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases Washington, D.C., November 28, 2017 \u2013 \u00a0Today, the National Organization for &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/rare-disease-advocates-host-a-save-the-orphan-drug-tax-credit-rally\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally&#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":[232,503,504],"tags":[1417,347,243,1402,1418],"class_list":["post-58878","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-events","category-press-releases","tag-saveorphandrugs","tag-orphan-drug-tax-credit","tag-peter-l-saltonstall","tag-tax-cuts-and-jobs-act","tag-virtual-hill-day"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58878","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=58878"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58878\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58878"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58878"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58878"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}