{"id":58952,"date":"2018-08-29T14:48:17","date_gmt":"2018-08-29T18:48:17","guid":{"rendered":"https:\/\/rarediseases.org\/2018-nord-rare-summit-to-feature-distinguished-speakers-discussing-a-new-era-of-patient-focused-innovation\/"},"modified":"2022-12-02T08:11:54","modified_gmt":"2022-12-02T13:11:54","slug":"2018-nord-rare-summit-to-feature-distinguished-speakers-discussing-a-new-era-of-patient-focused-innovation","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/2018-nord-rare-summit-to-feature-distinguished-speakers-discussing-a-new-era-of-patient-focused-innovation\/","title":{"rendered":"2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation"},"content":{"rendered":"<p><b>Washington, D.C., August 29, 2018<\/b><span style=\"font-weight: 400;\"> &#8211; The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of the speakers confirmed for the <\/span><a href=\"https:\/\/rarediseases.org\/summit-overview\/\"><span style=\"font-weight: 400;\">2018 NORD Rare Diseases &amp; Orphan Products Breakthrough Summit<\/span><\/a><span style=\"font-weight: 400;\">, to be held October 15-16 in Washington, D.C. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">The NORD Rare Summit, which takes place on an annual basis, is the most innovative multi-stakeholder event of its kind, drawing together more than 700 participants from across the rare disease community to discuss the most current and urgent topics related to rare diseases and orphan products. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u201cA New Era of Patient-Focused Innovation\u201d is the Summit\u2019s 2018 theme, which will be examined from the perspectives of a diverse group of thought leaders. Scott Gottlieb, M.D., Commissioner of the FDA, will provide the Summit\u2019s keynote speech. His will be joined by over 85 voices from the rare disease community, including:<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Christopher P. Austin, M.D. &#8211; Director, NIH National Center for Advancing Translational Sciences (NCATS)<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Tanisha Carino, Ph.D. &#8211; Executive Director, FasterCures<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Pushkal Garg, M.D. &#8211; Chief Medical Officer, Alnylam<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Richard Pazdur, M.D. &#8211; Director, FDA Oncology Center of Excellence<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Ashanthi De Silva &#8211; Rare Disease Editor, The Mighty, and the first gene therapy patient<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Shannon Resetich &#8211; Head of Rare Diseases for North America, Sanofi Genzyme<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Brendan Hayes &#8211; National Hemophilia Foundation<\/span><\/li>\n<li style=\"font-weight: 400;\"><span style=\"font-weight: 400;\">Richard Engel &#8211; Correspondent, NBC News (providing video remarks)<\/span><\/li>\n<\/ul>\n<p><span style=\"font-weight: 400;\">These speakers will join the <\/span><span style=\"font-weight: 400;\">directors of FDA\u2019s three medical centers, CDER, CBER and CDRH<\/span><span style=\"font-weight: 400;\">, as well as other leaders from NIH, patient groups, industry and academia. This year\u2019s program also features an expanded poster session; one-to-one networking opportunities; six breakout sessions over two days; and over two dozen roundtable discussions. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">Peter L. Saltonstall, President and CEO of NORD, said: \u201cIt is clear that the pace of innovation in rare diseases is accelerating. With innovation comes new challenges such as how patients will access these new treatments, whether payers will cover them and what role patients will play in future drug development. These are among the topics to be discussed at our Summit, which provides a unique opportunity to listen to cutting-edge speakers, network with peers, and hear directly from senior FDA staff about their current priorities.\u201d <\/span><\/p>\n<p><span style=\"font-weight: 400;\">Sponsors of the 2018 NORD Rare Summit include Sanofi Genzyme, Retrophin, Shire and Dohmen. For a complete listing of the panel discussions, breakout sessions, lunch and learn groups, networking opportunities and t<\/span><span style=\"font-weight: 400;\">he largest poster session to-date, <\/span><span style=\"font-weight: 400;\">download the <\/span><span style=\"font-weight: 400;\">agenda<\/span><span style=\"font-weight: 400;\">. To register for the 2018 NORD Rare Diseases &amp; Orphan Products Breakthrough Summit, click <\/span><a href=\"https:\/\/nord.cvent.com\/events\/rare-diseases-and-orphan-products-breakthrough-summit-2018\/event-summary-434d756f95fc43cfa2a4ac02dc9b4a90.aspx\" rel=\"nofollow noopener\" target=\"_blank\"><span style=\"font-weight: 400;\">here<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-weight: 400;\">###<\/span><\/p>\n<p><b>About the National Organization for Rare Disorders (NORD)\u00ae<\/b><\/p>\n<p><span style=\"font-weight: 400;\">The National Organization for Rare Disorders (NORD)<\/span><span style=\"font-weight: 400;\">\u00ae<\/span><span style=\"font-weight: 400;\">\u00a0is the leading independent advocacy organization representing all patients and families affected by rare diseases.\u00a0 NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.\u00a0 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. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.\u00a0 NORD represents more than 270 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Washington, D.C., August 29, 2018 &#8211; The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/2018-nord-rare-summit-to-feature-distinguished-speakers-discussing-a-new-era-of-patient-focused-innovation\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00ab2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation\u00bb<\/span><\/a><\/p>\n","protected":false},"author":47,"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":[232,503,190,662,210,191,192,504],"tags":[244,1275,265,1496,200,243,1473,1127],"class_list":["post-58952","post","type-post","status-publish","format-standard","hentry","category-advocacy","category-events","category-featured-news","category-get-involved","category-industry","category-medical","category-patients-members","category-press-releases","tag-fda","tag-food-and-drug-administration","tag-nih","tag-nord-rare-summit","tag-nord-summit","tag-peter-l-saltonstall","tag-rare-diseases-orphan-products-breakthrough-summit","tag-rare-summit"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58952","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\/47"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=58952"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/58952\/revisions"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=58952"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=58952"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=58952"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}