NORD’s RareLaunch® Toolkit

Posted March 8, 2021 by NORD

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New Report Finds Medical Treatments for Rare Diseases Account for Only 11% of US Drug Spending; Nearly 80% of Orphan Products Treat Rare Diseases Exclusively

NORD Joins with the Krabbe Disease Community to Publish “Voice of the Patient” Report

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.ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target,.rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{padding-left:0;padding-right:calc(var(--ubermenu-accordion-indent) * 4);}.ubermenu-responsive-toggle{display:block;}}@media screen and (max-width: 480px){.ubermenu.ubermenu-responsive .ubermenu-item-level-0{width:100%;}.ubermenu.ubermenu-responsive .ubermenu-column,.ubermenu.ubermenu-responsive .ubermenu-column-auto{min-width:100%;}.ubermenu .ubermenu-autocolumn:not(:first-child),.ubermenu .ubermenu-autocolumn:not(:first-child) .ubermenu-submenu-type-stack{padding-top:0;}.ubermenu .ubermenu-autocolumn:not(:last-child),.ubermenu .ubermenu-autocolumn:not(:last-child) .ubermenu-submenu-type-stack{padding-bottom:0;}.ubermenu .ubermenu-autocolumn > .ubermenu-submenu-type-stack > .ubermenu-item-normal:first-child{margin-top:0;}.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-item > .ubermenu-submenu-drop,.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-tab > .ubermenu-tab-content-panel{box-shadow:none;box-sizing:border-box;border-left:none;border-right:none;}.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-item.ubermenu-active > .ubermenu-submenu-drop,.ubermenu.ubermenu-responsive.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-tab.ubermenu-active > .ubermenu-tab-content-panel{position:static;}}.ubermenu-main .ubermenu-nav .ubermenu-item.ubermenu-item-level-0 > .ubermenu-target{font-weight:600;}.ubermenu-main .ubermenu-item-level-0 > .ubermenu-target{color:#0f131b;padding-left:12px;padding-right:12px;}.ubermenu-main .ubermenu-item-level-0.ubermenu-current-menu-item > .ubermenu-target,.ubermenu-main .ubermenu-item-level-0.ubermenu-current-menu-parent > .ubermenu-target,.ubermenu-main .ubermenu-item-level-0.ubermenu-current-menu-ancestor > .ubermenu-target{color:#fc4c02;}.ubermenu-main.ubermenu-sub-indicators .ubermenu-item-level-0.ubermenu-has-submenu-drop > .ubermenu-target:not(.ubermenu-noindicator){padding-right:27px;}.ubermenu-main.ubermenu-sub-indicators .ubermenu-item-level-0.ubermenu-has-submenu-drop > .ubermenu-target.ubermenu-noindicator{padding-right:12px;}.ubermenu-main .ubermenu-item-normal > .ubermenu-target,.ubermenu-main .ubermenu-submenu .ubermenu-target,.ubermenu-main .ubermenu-submenu .ubermenu-nonlink,.ubermenu-main .ubermenu-submenu .ubermenu-widget,.ubermenu-main .ubermenu-submenu .ubermenu-custom-content-padded,.ubermenu-main .ubermenu-submenu .ubermenu-retractor,.ubermenu-main .ubermenu-submenu .ubermenu-colgroup .ubermenu-column,.ubermenu-main .ubermenu-submenu.ubermenu-submenu-type-stack > .ubermenu-item-normal > .ubermenu-target,.ubermenu-main .ubermenu-submenu.ubermenu-submenu-padded{padding:5px;}.ubermenu-main .ubermenu-grid-row{padding-right:5px;}.ubermenu-main .ubermenu-grid-row .ubermenu-target{padding-right:0;}.ubermenu-main.ubermenu-sub-indicators .ubermenu-submenu :not(.ubermenu-tabs-layout-right) .ubermenu-has-submenu-drop > .ubermenu-target{padding-right:25px;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header > .ubermenu-target,.ubermenu-main .ubermenu-tab > .ubermenu-target{font-size:16px;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header > .ubermenu-target{color:#00558c;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header > .ubermenu-target:hover{color:#00558c;}.ubermenu-main .ubermenu-nav .ubermenu-submenu .ubermenu-item-header > .ubermenu-target{font-weight:600;}.ubermenu-main .ubermenu-submenu .ubermenu-item-header.ubermenu-has-submenu-stack > .ubermenu-target{border:none;}.ubermenu-main .ubermenu-submenu-type-stack{padding-top:0;}.ubermenu-premasthead .ubermenu-nav .ubermenu-item.ubermenu-item-level-0 > .ubermenu-target{font-weight:500;}.ubermenu-premasthead .ubermenu-item-level-0 > .ubermenu-target{color:#0f131b;padding-left:8px;padding-right:8px;}.ubermenu-premasthead .ubermenu-item-level-0.ubermenu-current-menu-item > .ubermenu-target,.ubermenu-premasthead .ubermenu-item-level-0.ubermenu-current-menu-parent > .ubermenu-target,.ubermenu-premasthead .ubermenu-item-level-0.ubermenu-current-menu-ancestor > .ubermenu-target{color:#fc4c02;}.ubermenu-premasthead .ubermenu-item-level-0 > .ubermenu-target,.ubermenu-premasthead .ubermenu-item-level-0 > .ubermenu-custom-content.ubermenu-custom-content-padded{padding-top:6px;padding-bottom:6px;}.ubermenu-premasthead.ubermenu-sub-indicators .ubermenu-item-level-0.ubermenu-has-submenu-drop > .ubermenu-target:not(.ubermenu-noindicator){padding-right:23px;}.ubermenu-premasthead.ubermenu-sub-indicators .ubermenu-item-level-0.ubermenu-has-submenu-drop > .ubermenu-target.ubermenu-noindicator{padding-right:8px;}.ubermenu.ubermenu-premasthead .ubermenu-item-normal > .ubermenu-target:hover,.ubermenu.ubermenu-premasthead .ubermenu-item-normal.ubermenu-active > .ubermenu-target{color:#0099bc;}.ubermenu-premasthead,.ubermenu-premasthead .ubermenu-target,.ubermenu-premasthead .ubermenu-nav .ubermenu-item-level-0 .ubermenu-target{font:13px Lato,sans-serif;}.ubermenu-mobheadrmainmenu .ubermenu-item-level-0 > .ubermenu-target{font-size:20px;text-transform:capitalize;color:#0f131b;border-top:1px solid #979797;}.ubermenu-mobheadrmainmenu .ubermenu-nav .ubermenu-item.ubermenu-item-level-0 > .ubermenu-target{font-weight:400;}.ubermenu.ubermenu-mobheadrmainmenu .ubermenu-item-level-0:hover > .ubermenu-target,.ubermenu-mobheadrmainmenu .ubermenu-item-level-0.ubermenu-active > .ubermenu-target{color:#0099bc;}.ubermenu-mobheadrmainmenu .ubermenu-item-level-0.ubermenu-current-menu-item > .ubermenu-target,.ubermenu-mobheadrmainmenu .ubermenu-item-level-0.ubermenu-current-menu-parent > .ubermenu-target,.ubermenu-mobheadrmainmenu .ubermenu-item-level-0.ubermenu-current-menu-ancestor > .ubermenu-target{color:#0099bc;background:#0099bc;}.ubermenu.ubermenu-mobheadrmainmenu .ubermenu-item-level-0 > .ubermenu-target{background:#fff;}.ubermenu-mobheadrmainmenu .ubermenu-item-normal > .ubermenu-target,.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-target,.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-nonlink,.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-widget,.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-custom-content-padded,.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-retractor,.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-colgroup .ubermenu-column,.ubermenu-mobheadrmainmenu .ubermenu-submenu.ubermenu-submenu-type-stack > .ubermenu-item-normal > .ubermenu-target,.ubermenu-mobheadrmainmenu .ubermenu-submenu.ubermenu-submenu-padded{padding:5px 5px;}.ubermenu-mobheadrmainmenu .ubermenu-grid-row{padding-right:5px 5px;}.ubermenu-mobheadrmainmenu .ubermenu-grid-row .ubermenu-target{padding-right:0;}.ubermenu-mobheadrmainmenu.ubermenu-sub-indicators .ubermenu-submenu :not(.ubermenu-tabs-layout-right) .ubermenu-has-submenu-drop > .ubermenu-target{padding-right:25px;}.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-item-header > .ubermenu-target,.ubermenu-mobheadrmainmenu .ubermenu-tab > .ubermenu-target{font-size:18px;}.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-item-header > .ubermenu-target{color:#00558c;}.ubermenu-mobheadrmainmenu .ubermenu-nav .ubermenu-submenu .ubermenu-item-header > .ubermenu-target{font-weight:900;}.ubermenu-mobheadrmainmenu .ubermenu-submenu .ubermenu-item-header.ubermenu-has-submenu-stack > .ubermenu-target{border:none;}.ubermenu-mobheadrmainmenu .ubermenu-submenu-type-stack{padding-top:0;}.ubermenu .ubermenu-item.ubermenu-item-13736 > .ubermenu-target,.ubermenu .ubermenu-item.ubermenu-item-13736 > .ubermenu-content-block,.ubermenu .ubermenu-item.ubermenu-item-13736.ubermenu-custom-content-padded{padding:12px 5px 37px 5px;}.ubermenu .ubermenu-item.ubermenu-item-13737 > .ubermenu-target,.ubermenu .ubermenu-item.ubermenu-item-13737 > .ubermenu-content-block,.ubermenu .ubermenu-item.ubermenu-item-13737.ubermenu-custom-content-padded{padding:12px 5px 52px 5px;}section.nord-layout img{max-width:100%;height:auto;}.page-id-101076 .su-spoiler-content{margin:0 !important;padding:0 !important;}.nord-rare-giving-list{display:flex;flex-wrap:wrap;}.membership-level-wrap{}.page-id-147 .fcl-3-columns-content .col-content-wrapper:nth-of-type(5){flex-basis:33.3%;}.logo-grid{display:flex;flex-wrap:wrap;}.nord-search-filter-wrap{background-color:#f1f1f1;border:1px solid #dedede;border-radius:4px;padding:15px;}.nord-search-filter-wrap.wide form .search-filter-field-group{justify-content:flex-start;}.nord-search-filter-wrap input[type="search"],.nord-search-filter-wrap select{height:38px;padding:2px 7px;width:100%;max-width:100%;border-radius:4px;}.nord-search-filter-wrap input[type="submit"]{display:flex;width:100%;height:38px;font-weight:600;align-items:center;justify-content:center;cursor:pointer;}.search-filter-field-group{margin-bottom:10px;}.nord-search-filter-wrap label{font-weight:600;}.nord-search-filter-wrap.wide{margin-top:2rem;margin-bottom:2rem;}.nord-search-filter-wrap.wide form{display:flex;flex-wrap:wrap;margin-left:-10px;margin-right:-10px;}.nord-search-filter-wrap.wide form .search-filter-field-group{display:flex;width:calc(100% / 3 - 20px);margin:10px;flex-direction:column;justify-content:space-between;}.nord-search-filter-wrap.wide input[type="submit"]{margin-top:10px;margin-right:10px;margin-left:10px;}.nord-ajax-results + .pagination-wrapper{margin-top:1rem;margin-bottom:4rem;}@media screen and (max-width:650px){.nord-search-filter-wrap.wide form .search-filter-field-group{width:100% !important;margin-left:0;margin-right:0;}}