{"id":59405,"date":"2022-04-25T20:14:02","date_gmt":"2022-04-26T00:14:02","guid":{"rendered":"https:\/\/rarediseases.org\/nord-pays-tribute-to-life-and-service-of-senator-orrin-hatch\/"},"modified":"2022-04-25T20:14:02","modified_gmt":"2022-04-26T00:14:02","slug":"nord-pays-tribute-to-life-and-service-of-senator-orrin-hatch","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/nord-pays-tribute-to-life-and-service-of-senator-orrin-hatch\/","title":{"rendered":"NORD Pays Tribute to Life and Service of Senator Orrin Hatch"},"content":{"rendered":"<p><b><span data-contrast=\"none\">April 25, 2022, Washington DC&#8212;-<\/span><\/b><span data-contrast=\"none\">The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who passed away over the weekend.\u00a0\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:254}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">\u201cOver his many years in Congress, Senator Hatch demonstrated his commitment to public health and his concern for the millions of Americans affected by rare diseases through his leadership on numerous issues,\u201d said Peter L. Saltonstall, President and CEO, NORD. \u201cThis includes the key role he played in shepherding the <\/span><i><span data-contrast=\"none\">Orphan Drug Act <\/span><\/i><span data-contrast=\"none\">through the Senate in the early 1980s to encourage development of treatments for rare diseases. He recognized, at a time when few others did, the crisis for individuals with rare diseases who had no hope of a treatment or cure.\u201d\u00a0\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:254}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">In grateful appreciation of Senator Hatch\u2019s support for the 30 million Americans affected by rare diseases, NORD honored him in 1987 and again in 2016 with its National Health Leadership Award.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:254}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">In addition to Senator Hatch\u2019s leadership on the <\/span><i><span data-contrast=\"none\">Orphan Drug Act, <\/span><\/i><span data-contrast=\"none\">his many important contributions over the years to public health and support for those with rare diseases have included:\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:254}\">\u00a0<\/span><\/p>\n<ul>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"10\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><span data-contrast=\"none\">In 2000, Senator Hatch and Senator Ted Kennedy introduced the <\/span><i><span data-contrast=\"none\">Rare Diseases Act<\/span><\/i><span data-contrast=\"none\">, for which NORD advocated in support of, to enhance federal funding for rare disease research and accelerate the development of treatments. The legislation ultimately was split into two bills \u2013 the <\/span><i><span data-contrast=\"none\">Rare Diseases Act <\/span><\/i><span data-contrast=\"none\">and the <\/span><i><span data-contrast=\"none\">Orphan Products Development Act.<\/span><\/i><span data-contrast=\"none\">\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259,&quot;469777462&quot;:[720],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"10\" aria-setsize=\"-1\" data-aria-posinset=\"2\" data-aria-level=\"1\"><span data-contrast=\"none\">In 2002, the <\/span><i><span data-contrast=\"none\">Rare Diseases Act <\/span><\/i><span data-contrast=\"none\">was signed into law to codify the NIH Office of Rare Diseases Research and provide for the establishment of the NIH Rare Diseases Clinical Research Network with $55 million in funding for rare disease research.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259,&quot;469777462&quot;:[720],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"10\" aria-setsize=\"-1\" data-aria-posinset=\"3\" data-aria-level=\"1\"><span data-contrast=\"none\">In 2015, Senator Hatch was named co-chair of the Rare Disease Congressional Caucus.\u00a0<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259,&quot;469777462&quot;:[720],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}\">\u00a0<\/span><\/li>\n<li data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"10\" aria-setsize=\"-1\" data-aria-posinset=\"4\" data-aria-level=\"1\"><span data-contrast=\"none\">In 2016, he was a co-sponsor of the <\/span><i><span data-contrast=\"none\">OPEN Act, <\/span><\/i><span data-contrast=\"none\">legislation that was introduced to provide incentives for companies to \u201crepurpose\u201d previously approved drugs for the treatment of rare diseases.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:160,&quot;335559740&quot;:259,&quot;469777462&quot;:[720],&quot;469777927&quot;:[0],&quot;469777928&quot;:[1]}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">To learn more about NORD&#8217;s policy work, visit:\u202f<\/span><a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=3049489-1&amp;h=3885525645&amp;u=http%3A%2F%2Fbit.ly%2FPolicy-Issues&amp;a=http%3A%2F%2Fbit.ly%2FPolicy-Issues\" rel=\"nofollow noopener\" target=\"_blank\"><span data-contrast=\"none\">https:\/\/bit.ly\/Policy-Issues<\/span><\/a><span data-contrast=\"auto\">.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:2,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:200,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><b><i><span data-contrast=\"auto\">About the National Organization for Rare Disorders (NORD)<\/span><\/i><\/b><span data-ccp-props=\"{&quot;201341983&quot;:2,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:200,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n<p><i><span data-contrast=\"auto\">The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases\u202fin\u202fthe United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical\u202fresearch,\u202fand providing patient and family services for those who need them most.\u202fTogether with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit\u202f<\/span><\/i><a href=\"https:\/\/rarediseases.org\/\"><i><span data-contrast=\"none\">rarediseases.org<\/span><\/i><\/a><i><span data-contrast=\"auto\">.<\/span><\/i><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335551550&quot;:6,&quot;335551620&quot;:6,&quot;335559739&quot;:160,&quot;335559740&quot;:276}\">\u00a0<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>April 25, 2022, Washington DC&#8212;-The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/nord-pays-tribute-to-life-and-service-of-senator-orrin-hatch\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> &#8220;NORD Pays Tribute to Life and Service of Senator Orrin Hatch&#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":[232,504],"tags":[357,236,262,2975,1727,361,755,2976,2977,380],"class_list":["post-59405","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-press-releases","tag-capitol-hill","tag-congress","tag-orphan-drug-act","tag-orrin-hatch","tag-rare-disease-congressional-caucus","tag-senate","tag-senator-orrin-hatch","tag-us-congress","tag-utah","tag-washington-dc"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59405","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=59405"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/59405\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=59405"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=59405"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=59405"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}