{"id":292887,"date":"2026-10-06T13:52:24","date_gmt":"2026-10-06T17:52:24","guid":{"rendered":"https:\/\/rarediseases.org\/?p=292887"},"modified":"2026-10-06T14:06:46","modified_gmt":"2026-10-06T18:06:46","slug":"cnbcs-becky-quick-to-moderate-ceo-leadership-dialogue-on-the-next-decade-of-rare-disease-at-the-nord-breakthrough-summit","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/cnbcs-becky-quick-to-moderate-ceo-leadership-dialogue-on-the-next-decade-of-rare-disease-at-the-nord-breakthrough-summit\/","title":{"rendered":"CNBC\u2019s Becky Quick to Moderate CEO Leadership Dialogue on the Next Decade of Rare Disease at the NORD Breakthrough Summit"},"content":{"rendered":"<p><em>BioMarin, Jazz Pharmaceuticals, and Otsuka CEOs to Join NORD CEO to Examine What it Takes to Turn Scientific Advancements into Patient Progress\u00a0<\/em><\/p>\n<p><b><span data-contrast=\"auto\">WASHINGTON, D.C. and NORWELL, Mass., October 6, 2026 <\/span><\/b><span data-contrast=\"auto\">\u2014 The National Organization for Rare Disorders (NORD\u00ae) today announced that CNBC \u201cSquawk Box\u201d co-anchor and \u201cCNBC Cures\u201d host <strong>Becky Quick<\/strong> will moderate a rare disease CEO leadership dialogue featuring the CEOs of BioMarin, Jazz Pharmaceuticals and Otsuka alongside NORD CEO <strong>Pam Gavin<\/strong> at the <\/span><a href=\"https:\/\/nordsummit.org\/agenda\/\" target=\"_blank\" rel=\"noopener nofollow\"><span data-contrast=\"none\"><strong>NORD\u00ae Rare Diseases &amp; Orphan Products Breakthrough Summit\u00ae<\/strong><\/span><\/a><span data-contrast=\"auto\">.<\/span><span data-contrast=\"auto\"> The panel will take place at <strong>11 a.m. ET on Monday, Oct. 26, in Washington, D.C<\/strong>., during the three-day Summit, <strong>Oct. 25\u201327<\/strong>. Register and see the full agenda at <\/span><a href=\"https:\/\/nordsummit.org\/agenda\/\" target=\"_blank\" rel=\"noopener nofollow\"><span data-contrast=\"none\"><strong>NORDSummit.org<\/strong><\/span><\/a>.<\/p>\n<p><b><span data-contrast=\"auto\"><img loading=\"lazy\" decoding=\"async\" class=\" wp-image-292888 alignright\" src=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/10\/CEO-Panel_Full-Titles-1-240x300.png\" alt=\"\" width=\"371\" height=\"463\" srcset=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/10\/CEO-Panel_Full-Titles-1-240x300.png 240w, https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/10\/CEO-Panel_Full-Titles-1-819x1024.png 819w, https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/10\/CEO-Panel_Full-Titles-1-768x960.png 768w, https:\/\/rarediseases.org\/wp-content\/uploads\/2026\/10\/CEO-Panel_Full-Titles-1.png 1080w\" sizes=\"auto, (max-width: 371px) 100vw, 371px\" \/>\u201cNext Decade of Rare Disease: A CEO Leadership Dialogue\u201d<\/span><\/b><span data-contrast=\"auto\"> comes at a pivotal time for rare disease. Scientific and technological advances are creating new possibilities for diagnosis and treatment, but realizing their full potential will require regulatory frameworks, policies, investment, healthcare infrastructure and treatment delivery to keep pace. The conversation will examine the leadership, decisions and partnerships needed to capitalize on this moment and address the challenge of scale\u2014advancing more treatments for more rare diseases.<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:269}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Participants in the CEO leadership dialogue include:<\/span><span data-ccp-props=\"{&quot;134233279&quot;:true,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:269}\">\u00a0<\/span><\/p>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"1\" data-aria-level=\"1\"><a href=\"https:\/\/www.cnbc.com\/becky-quick\/\" target=\"_blank\" rel=\"noopener nofollow\"><b><span data-contrast=\"none\">Becky Quick<\/span><\/b><\/a><b><span data-contrast=\"auto\">,<\/span><\/b><span data-contrast=\"auto\"> co-anchor, CNBC Squawk Box and host, CNBC Cures, Moderator<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:269}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"2\" data-aria-level=\"1\"><a href=\"https:\/\/www.biomarin.com\/company\/leadership\/alexander-hardy\/\" target=\"_blank\" rel=\"noopener nofollow\"><b><span data-contrast=\"none\">Alexander Hardy<\/span><\/b><\/a><span data-contrast=\"auto\">, President and CEO, BioMarin<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:269}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"3\" data-aria-level=\"1\"><a href=\"https:\/\/www.jazzpharma.com\/about\/leadership\" target=\"_blank\" rel=\"noopener nofollow\"><b><span data-contrast=\"none\">Renee Gala<\/span><\/b><\/a><b><span data-contrast=\"auto\">,<\/span><\/b><span data-contrast=\"auto\"> President and CEO, Jazz Pharmaceuticals<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:269}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"4\" data-aria-level=\"1\"><a href=\"https:\/\/www.linkedin.com\/in\/tarekrabah\/\" target=\"_blank\" rel=\"noopener nofollow\"><b><span data-contrast=\"none\">Tarek Rabah<\/span><\/b><span data-contrast=\"none\">,<\/span><\/a><span data-contrast=\"auto\"> President and CEO, Otsuka North America Pharmaceutical<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:269}\">\u00a0<\/span><\/li>\n<\/ul>\n<ul>\n<li aria-setsize=\"-1\" data-leveltext=\"\uf0b7\" data-font=\"Symbol\" data-listid=\"6\" data-list-defn-props=\"{&quot;335552541&quot;:1,&quot;335559685&quot;:720,&quot;335559991&quot;:360,&quot;469769226&quot;:&quot;Symbol&quot;,&quot;469769242&quot;:[8226],&quot;469777803&quot;:&quot;left&quot;,&quot;469777804&quot;:&quot;\uf0b7&quot;,&quot;469777815&quot;:&quot;hybridMultilevel&quot;}\" data-aria-posinset=\"5\" data-aria-level=\"1\"><a href=\"https:\/\/rarediseases.org\/wp-content\/uploads\/2022\/05\/Pamela-Gavin.pdf\" target=\"_blank\" rel=\"noopener\"><b><span data-contrast=\"none\">Pam Gavin<\/span><\/b><\/a><span data-contrast=\"auto\">, CEO, NORD<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:120,&quot;335559740&quot;:269}\">\u00a0<\/span><\/li>\n<\/ul>\n<p><span data-contrast=\"auto\">The three biopharmaceutical CEOs bring perspectives from global companies with distinct rare disease portfolios, pipelines and experience developing and delivering treatments across a range of rare diseases. Gavin will bring NORD\u2019s independent, cross-disease patient and systems perspective, connecting the scientific and business questions facing rare disease innovation with the diverse unmet needs, care and access challenges experienced by people across more than 10,000 rare diseases.<\/span><span data-ccp-props=\"{&quot;134233117&quot;:true,&quot;134233118&quot;:true,&quot;201341983&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Quick brings decades of experience covering business and markets and interviewing some of the world\u2019s most influential business leaders, along with a personal connection to rare disease as a parent of a child living with a rare disease. She will guide the conversation, bringing together these perspectives to explore how leaders can maximize the potential of scientific and technological innovation and translate individual breakthroughs into progress across more rare diseases.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cWe are at an important moment for rare disease. Science is opening doors that would have been unimaginable even a decade ago, but discovery alone does not ensure those advances reach the people who need them,\u201d said <strong>Pam Gavin<\/strong>, CEO of NORD. \u201cRealizing that potential will require leadership across the rare disease ecosystem to remove barriers, keep pace with innovation and translate progress into better outcomes for more people across more rare diseases. That is why this conversation\u2014and the Breakthrough Summit\u2014matter right now.\u201d<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Now in its 16<\/span><span data-contrast=\"auto\">th<\/span><span data-contrast=\"auto\"> year, the NORD Rare Disease &amp; Orphan Products Breakthrough Summit brings together more than 900 leaders from across the rare disease ecosystem to address critical issues shaping the future of rare disease research, treatment, policy, care and access. Programming spans federal health and regulatory priorities, emerging therapies and technologies, investment, patient partnership and the systems needed to move breakthroughs from discovery to patients.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">The 2026 Breakthrough Summit will also feature remarks and conversations with senior federal health leaders, including <strong>Kyle Diamantas<\/strong>, J.D., Acting Commissioner of the U.S. Food and Drugs Administration (FDA), and <strong>Jay Bhattacharya<\/strong>, M.D., Ph.D., Director of the National Institutes of Health (NIH).<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">The NORD Breakthrough Summit is built around cross-sector collaboration on complex challenges that no single organization or sector can solve alone. Register and view the full agenda at: <\/span><a href=\"https:\/\/nordsummit.org\/agenda\/\" target=\"_blank\" rel=\"noopener nofollow\"><span data-contrast=\"none\"><strong>NORDSummit.org<\/strong><\/span><\/a>.<\/p>\n<p><b><span data-contrast=\"none\">About the National Organization for Rare Disorders (NORD<\/span><\/b><b><span data-contrast=\"none\">\u00ae<\/span><\/b><b><span data-contrast=\"none\">)<\/span><\/b><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"none\">Founded in 1983, the National Organization for Rare Disorders (NORD\u00ae) is a leading independent, nonpartisan, nonprofit organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at rarediseases.org.<\/span><span data-ccp-props=\"{&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><b><span data-contrast=\"auto\">Media Contact:<\/span><\/b><\/p>\n<p><span data-contrast=\"auto\">Cheryl Herbert<\/span><br \/>\n<span data-contrast=\"auto\">Vice President, Marketing &amp; Communications<\/span><br \/>\n<strong><a href=\"mailto:cherbert@raredisease.org\" target=\"_blank\" rel=\"noopener\">cherbert@raredisease.org<\/a>\/<\/strong><strong><a href=\"mailto:media@rarediseases.org\" target=\"_blank\" rel=\"noopener\">media@rarediseases.org\u00a0<\/a><\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>BioMarin, Jazz Pharmaceuticals, and Otsuka CEOs to Join NORD CEO to Examine What it Takes to Turn Scientific Advancements into Patient Progress\u00a0 WASHINGTON, D.C. and NORWELL, Mass., October 6, 2026 &hellip; <\/p>\n<p class=\"link-more\"><a href=\"https:\/\/rarediseases.org\/es\/cnbcs-becky-quick-to-moderate-ceo-leadership-dialogue-on-the-next-decade-of-rare-disease-at-the-nord-breakthrough-summit\/\" class=\"more-link\">Continue reading<span class=\"screen-reader-text\"> \u00abCNBC\u2019s Becky Quick to Moderate CEO Leadership Dialogue on the Next Decade of Rare Disease at the NORD Breakthrough Summit\u00bb<\/span><\/a><\/p>\n","protected":false},"author":37,"featured_media":292889,"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":[190,503,210],"tags":[],"class_list":["post-292887","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured-news","category-events","category-industry"],"acf":[],"_links":{"self":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/292887","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\/37"}],"replies":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/comments?post=292887"}],"version-history":[{"count":0,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/posts\/292887\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media\/292889"}],"wp:attachment":[{"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/media?parent=292887"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/categories?post=292887"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/rarediseases.org\/es\/wp-json\/wp\/v2\/tags?post=292887"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}