{"id":268101,"date":"2024-10-01T09:29:00","date_gmt":"2024-10-01T12:00:00","guid":{"rendered":"https:\/\/hispanicprwire.com\/english-new-california-law-establishes-the-jacqueline-marie-zbur-rare-disease-advisory-council-rdac\/"},"modified":"2024-10-01T09:30:01","modified_gmt":"2024-10-01T13:30:01","slug":"la-nueva-ley-de-california-establece-el-consejo-asesor-de-enfermedades-raras-jacqueline-marie-zbur-rdac","status":"publish","type":"post","link":"https:\/\/hispanicprwire.com\/en\/la-nueva-ley-de-california-establece-el-consejo-asesor-de-enfermedades-raras-jacqueline-marie-zbur-rdac\/","title":{"rendered":"New California Law Establishes the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC)"},"content":{"rendered":"<p><\/p>\n<style type=\"text\/css\"><![CDATA[\n\/* Style Definitions *\/\nspan.prnews_span\n{\nfont-size:8pt;\nfont-family:\"Arial\";\ncolor:black;\n}\na.prnews_a\n{\ncolor:blue;\n}\nli.prnews_li\n{\nfont-size:8pt;\nfont-family:\"Arial\";\ncolor:black;\n}\np.prnews_p\n{\nfont-size:0.62em;\nfont-family:\"Arial\";\ncolor:black;\nmargin:0in;\n}\n.prntac{\nTEXT-ALIGN: CENTER\n}\n]]><\/style>\n<div class=\"xn-content\">\n<p class=\"prntac\"><b><i>Council will advise and advocate on needs of <span class=\"xn-location\">California&#8217;s<\/span> rare disease community<\/i><\/b><\/p>\n<p><span class=\"xn-location\">SACRAMENTO, Calif.<\/span>, <span class=\"xn-chron\">Oct. 1, 2024<\/span> \/PRNewswire-HISPANIC PR WIRE\/ &#8212; <span class=\"xn-location\">California<\/span> Governor <span class=\"xn-person\">Gavin Newsom<\/span> signed into law AB 2613, legislation that creates the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC). Named in honor of Assemblymember <span class=\"xn-person\">Rick Zbur&#8217;s<\/span> sister who battled ALS, Assemblymember Zbur introduced AB 2613, which was championed by the <a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=3860913832&amp;u=https%3A%2F%2Frarediseases.org%2F&amp;a=National+Organization+for+Rare+Disorders+(NORD)\" target=\"_blank\" rel=\"nofollow\">National Organization for Rare Disorders (NORD)<\/a> and 35 <a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=3567208871&amp;u=https%3A%2F%2Frarediseases.org%2Fwp-content%2Fuploads%2F2024%2F09%2FAB2613-Patient-Organization-Letter-of-Support-8.30.24.pdf&amp;a=other+patient+organizations\" target=\"_blank\" rel=\"nofollow\">other patient organizations<\/a>, to establish a dedicated Council to address the needs of Californians affected by rare diseases.<\/p>\n<div id=\"prni_dvprnejpg8728left\" dir=\"ltr\" style=\"width: 100%; text-align: left;\"><img decoding=\"async\" id=\"prnejpg8728left\" title=\"National Organization for Rare Disorders (NORD) logo \" src=\"https:\/\/mma.prnewswire.com\/media\/2519407\/4942875\/NORD_Logo.jpg\" alt=\"National Organization for Rare Disorders (NORD) logo \" align=\"middle\"\/><\/div>\n<p>With Governor\u00a0Newsom&#8217;s signature, <span class=\"xn-location\">California<\/span> becomes the 29<sup>th<\/sup> state to create an RDAC. The California\u00a0RDAC will include a diverse group of members from the rare disease community including patients, caregivers, healthcare providers, researchers, and pharmaceutical and health insurance companies that educate and advise lawmakers about rare disease and make recommendations on how to improve access to critical healthcare and other services.<\/p>\n<p>&#8220;Rare disease impacts 1 in 10 Californians. For\u00a0Assemblymember Zbur, this is not just a statistic. He knows firsthand the heartbreak and burden rare disease patients and families face as they navigate a complex healthcare system,&#8221; said NORD CEO <span class=\"xn-person\">Pamela Gavin<\/span>. &#8220;We are immensely grateful to him for championing this legislation and to the Governor for signing it into law and giving the <span class=\"xn-location\">California<\/span> rare disease community a vital voice in guiding state policy that will help transform and save lives.&#8221;<\/p>\n<p>Nationwide, more than 30 million Americans have a rare disease, defined as any disease that impacts fewer than 200,000 people. Of the more than 10,000 known rare diseases, only approximately 5% have an FDA-approved treatment.<sup>i<\/sup> Getting an accurate diagnosis can take years for some rare disease patients and their direct medical costs have shown to be three to five times higher than someone of similar age who does not have a rare disease.<sup>ii<\/sup><\/p>\n<p>&#8220;I am deeply grateful to Governor\u00a0Newsom for signing into law AB 2613, a bill to create a Rare Disease Advisory Council (RDAC), named after my late sister <span class=\"xn-person\">Jackie Zbur<\/span>,&#8221; said Assemblymember <span class=\"xn-person\">Rick Chavez Zbur<\/span> (D-<span class=\"xn-location\">Hollywood<\/span>). &#8220;This moment is profoundly personal for me, as my sister Jackie is the reason I ran for office in the first place. Near the end of her battle with\u00a0ALS, she made me promise her to pursue public service to use my voice to help others. Your organization&#8217;s support of this bill honors her legacy and ensures that the rare disease community in <span class=\"xn-location\">California<\/span> will finally have the platform it deserves. I am especially thankful to NORD for its tireless advocacy and partnership in making this bill a reality. With this, we take a significant step toward fulfilling my promise to Jackie\u2014to make a real difference for families facing these challenges, just as she hoped.&#8221;<\/p>\n<p>&#8220;The sad truth is the hardships families like mine face across <span class=\"xn-location\">California<\/span> and the\u00a0U.S. are all too common. Parents like me often feel invisible and lost,&#8221; said <span class=\"xn-person\">Mike Hu<\/span>, an <span class=\"xn-location\">Oakland<\/span> resident with two sons both living with a rare disease. &#8220;But our family has never lost hope. <span class=\"xn-location\">California&#8217;s<\/span> new Rare Disease Advisory Council will make a meaningful difference in the lives of those impacted by rare diseases and build a future where no rare disease patient is left behind.&#8221;<\/p>\n<p>On <span class=\"xn-chron\">Friday, September 27<\/span> Governor\u00a0Newsom declared <span class=\"xn-location\">California<\/span> as the second state this year to establish an RDAC. In 2020, NORD launched Project RDAC to expand the number of states with an RDAC and to optimize the existing RDACs to ensure their benefit to the rare disease community.<\/p>\n<p>&#8220;Our incredible advocates played a vital role in pushing AB2613 forward and making the California RDAC a reality, both in-person at our first-ever lobby day, and through countless letters and emails to lawmakers. An extra special thanks to the RDAC Coalition Steering Committee members for their unwavering commitment and leadership. Together, we&#8217;re making a difference for the rare disease community in <span class=\"xn-location\">California<\/span>,&#8221; stated <span class=\"xn-person\">Lindsey Viscarra<\/span>, NORD State Policy Manager.<\/p>\n<p>Individuals can get involved and support their state&#8217;s rare disease community by joining\u00a0NORD&#8217;s <a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=3742810381&amp;u=https%3A%2F%2Frarediseases.org%2Fdriving-policy%2Fjoin-the-rareaction-network%2F&amp;a=Rare+Action+Network%C2%AE\" target=\"_blank\" rel=\"nofollow\">Rare Action Network<sup>\u00ae<\/sup><\/a>, and they can learn more about NORD&#8217;s <a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=3755334264&amp;u=https%3A%2F%2Frarediseases.org%2Frare-disease-advisory-councils%2F&amp;a=Project+RDAC+and+Rare+Disease+Advisory+Councils\" target=\"_blank\" rel=\"nofollow\">Project RDAC and Rare Disease Advisory Councils<\/a>.<\/p>\n<p><b><u>About the National Organization for Rare Disorders (NORD)<\/u><\/b> <br \/>With a more than 40-year history of advancing care, treatments and policy, the <a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=3860913832&amp;u=https%3A%2F%2Frarediseases.org%2F&amp;a=National+Organization+for+Rare+Disorders+(NORD)\" target=\"_blank\" rel=\"nofollow\">National Organization for Rare Disorders (NORD)<\/a> is the leading and longest-standing patient advocacy group for the more than 30 million Americans living with a rare disease. An independent 501(c)(3) nonprofit, NORD is dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 340 patient organization members, is committed to improving the health and well-being of people with rare diseases by driving advances in care, research and policy.<\/p>\n<p>i\u00a0<a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=2218035522&amp;u=https%3A%2F%2Fdoi.org%2F10.1186%2Fs13023-023-02790-7&amp;a=https%3A%2F%2Fdoi.org%2F10.1186%2Fs13023-023-02790-7\" target=\"_blank\" rel=\"nofollow\">https:\/\/doi.org\/10.1186\/s13023-023-02790-7<\/a><br \/><sup>ii<\/sup> <a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=2061215160&amp;u=https%3A%2F%2Fojrd.biomedcentral.com%2Farticles%2F10.1186%2Fs13023-021-02061-3&amp;a=https%3A%2F%2Fojrd.biomedcentral.com%2Farticles%2F10.1186%2Fs13023-021-02061-3\" target=\"_blank\" rel=\"nofollow\">https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-021-02061-3<\/a><\/p>\n<p>Logo &#8211; <a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4267172-1&amp;h=917035201&amp;u=https%3A%2F%2Fmma.prnewswire.com%2Fmedia%2F2519407%2F4942875%2FNORD_Logo.jpg&amp;a=https%3A%2F%2Fmma.prnewswire.com%2Fmedia%2F2519407%2F4942875%2FNORD_Logo.jpg\" target=\"_blank\" rel=\"nofollow\">https:\/\/mma.prnewswire.com\/media\/2519407\/4942875\/NORD_Logo.jpg<\/a><\/p>\n<p>SOURCE  National Organization for Rare Disorders (NORD)<\/p>\n<\/div>\n<p><\/p>","protected":false},"excerpt":{"rendered":"<div class=\"xn-content\">\n<p class=\"prntac\"><b><i>Council will advise and advocate on needs of <span class=\"xn-location\">California&#8217;s<\/span> rare disease community<\/i><\/b><\/p>\n<p><span class=\"xn-location\">SACRAMENTO, Calif.<\/span>, <span class=\"xn-chron\">Oct. 1, 2024<\/span> \/PRNewswire-HISPANIC PR WIRE\/ &#8212; <span class=\"xn-location\">California<\/span> Governor <span class=\"xn-person\">Gavin Newsom<\/span> signed into law AB 2613, legislation that creates the Jacqueline Marie Zbur Rare Disease Advisory Council (RDAC). Named in honor of Assemblymember <span class=\"xn-person\">Rick Zbur&#8217;s<\/span>&#8230;<\/p>\n","protected":false},"author":1,"featured_media":268102,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-268101","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-salud"],"acf":[],"_links":{"self":[{"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/posts\/268101","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/comments?post=268101"}],"version-history":[{"count":"1","href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/posts\/268101\/revisions"}],"predecessor-version":[{"id":268108,"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/posts\/268101\/revisions\/268108"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/media\/268102"}],"wp:attachment":[{"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/media?parent=268101"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/categories?post=268101"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hispanicprwire.com\/en\/wp-json\/wp\/v2\/tags?post=268101"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}