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Public Policy Positions - National Organization for Rare Disorders
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} .ubermenu.ubermenu-mobile-modal .ubermenu-item-level-0{ margin:0; } .ubermenu.ubermenu-mobile-modal .ubermenu-mobile-close-button{ border:none; background:none; border-radius:0; padding:1em; color:inherit; display:inline-block; text-align:center; font-size:14px; } .ubermenu.ubermenu-mobile-modal .ubermenu-mobile-footer .ubermenu-mobile-close-button{ width: 100%; display: flex; align-items: center; justify-content: center; } .ubermenu.ubermenu-mobile-modal .ubermenu-mobile-footer .ubermenu-mobile-close-button .ubermenu-icon-essential, .ubermenu.ubermenu-mobile-modal .ubermenu-mobile-footer .ubermenu-mobile-close-button .fas.fa-times{ margin-right:.2em; } /* Header/Footer Mobile content */ .ubermenu .ubermenu-mobile-header, .ubermenu .ubermenu-mobile-footer{ display:block; text-align:center; color:inherit; } /* Accordion submenus mobile (single column tablet) */ .ubermenu.ubermenu-responsive-single-column.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-item > .ubermenu-submenu-drop, .ubermenu.ubermenu-responsive-single-column.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-tab > .ubermenu-tab-content-panel{ box-sizing:border-box; border-left:none; border-right:none; box-shadow:none; } .ubermenu.ubermenu-responsive-single-column.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-item.ubermenu-active > .ubermenu-submenu-drop, .ubermenu.ubermenu-responsive-single-column.ubermenu-mobile-accordion.ubermenu-interaction-press .ubermenu-tab.ubermenu-active > .ubermenu-tab-content-panel{ position:static; } /* Accordion indented - remove borders and extra spacing from headers */ .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu.ubermenu-submenu-drop, .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu .ubermenu-item-header.ubermenu-has-submenu-stack > .ubermenu-target{ border:none; } .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu .ubermenu-item-header.ubermenu-has-submenu-stack > .ubermenu-submenu-type-stack{ padding-top:0; } /* Accordion dropdown indentation padding */ .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target, .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{ padding-left:calc( var(--ubermenu-accordion-indent) * 2 ); } .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target, .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{ padding-left:calc( var(--ubermenu-accordion-indent) * 3 ); } .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target, .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:calc( var(--ubermenu-accordion-indent) * 4 ); } /* Reverse Accordion dropdown indentation padding */ .rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-submenu-drop .ubermenu-item > .ubermenu-target, .rtl .ubermenu.ubermenu-mobile-accordion-indent .ubermenu-submenu-drop .ubermenu-tab-content-panel .ubermenu-item > .ubermenu-target{ padding-left:0; padding-right:calc( var(--ubermenu-accordion-indent) * 2 ); } .rtl .ubermenu.ubermenu-mobile-accordion-indent .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-item > .ubermenu-target{ padding-left:0; padding-right:calc( var(--ubermenu-accordion-indent) * 3 ); } .rtl .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; } /* Accordion submenus mobile */ .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 Custom Menu Styles (Customizer) **/ /* main */ .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; } /* premasthead */ .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; } /* mobheadrmainmenu */ .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:#ffffff; } .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 Custom Menu Item Styles (Menu Item Settings) **/ /* 13736 */ .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; } /* 13737 */ .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; 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class="ubermenu-item ubermenu-item-type-post_type ubermenu-item-object-page ubermenu-level-6 ubermenu-item-62856 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/understanding-rare-disease/rare-disease-facts-and-statistics/"><span class="ubermenu-target-title ubermenu-target-text">Rare Disease Facts and Statistics</span></a></li><li id="menu-item-10495" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-10495 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/rare-diseases"><span class="ubermenu-target-title ubermenu-target-text">NORD’s Rare Disease Database</span></a></li><li id="menu-item-98573" class="ubermenu-item ubermenu-item-type-post_type ubermenu-item-object-page ubermenu-level-6 ubermenu-item-98573 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/video-library/"><span class="ubermenu-target-title ubermenu-target-text">Rare Disease Video Library</span></a></li><li id="menu-item-10496" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-10496 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/understanding-rare-disease/undiagnosed-diseases/"><span class="ubermenu-target-title ubermenu-target-text">What It Means To Be Undiagnosed</span></a></li><li id="menu-item-10497" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-10497 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/get-involved/patient-organizations/"><span class="ubermenu-target-title ubermenu-target-text">Find A Rare Disease Organization</span></a></li></ul></li></ul></li><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-4 ubermenu-item-10489 ubermenu-item-level-4 ubermenu-column ubermenu-column-1-2 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-10489"><ul class="ubermenu-submenu ubermenu-submenu-id-10489 ubermenu-submenu-type-stack" ><li id="menu-item-10499" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-item-has-children ubermenu-level-5 ubermenu-item-10499 ubermenu-item-header ubermenu-item-level-5 ubermenu-column ubermenu-column-auto ubermenu-has-submenu-stack" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/news/?taxonomy%5Bcategory%5D=patient-stories"><span class="ubermenu-target-title ubermenu-target-text">Stay informed</span></a><ul class="ubermenu-submenu ubermenu-submenu-id-10499 ubermenu-submenu-type-auto ubermenu-submenu-type-stack" ><li id="menu-item-10500" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-10500 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/news/?taxonomy%5Bcategory%5D=patient-stories"><span class="ubermenu-target-title ubermenu-target-text">Stories That Inspire</span></a></li><li id="menu-item-10501" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-10501 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" target="_blank" href="https://learn.rarediseases.org/"><span class="ubermenu-target-title ubermenu-target-text">RareEdu<sup>®</sup> – Online Learning Platform</span></a></li><li id="menu-item-10503" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-10503 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/rare-disease-day/"><span class="ubermenu-target-title ubermenu-target-text">Rare Disease Day</span></a></li><li id="menu-item-13561" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-13561 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/resource-library/"><span class="ubermenu-target-title ubermenu-target-text">Resource Library</span></a></li><li id="menu-item-260041" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-260041 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/state-resource-center/"><span class="ubermenu-target-title ubermenu-target-text">State Resource Center</span></a></li><li id="menu-item-13562" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-13562 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/resource-library/?taxonomy%5Bresource_type%5D=publication"><span class="ubermenu-target-title ubermenu-target-text">Publications On Rare Disease</span></a></li></ul></li></ul></li></ul></div></li><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-2 ubermenu-advanced-sub ubermenu-item-13569 ubermenu-item-level-2 ubermenu-column ubermenu-column-1-2 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13569"><div class="ubermenu-submenu ubermenu-submenu-id-13569 ubermenu-submenu-type-stack" ><ul class="ubermenu-row ubermenu-row-id-13573 ubermenu-autoclear "><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-4 ubermenu-item-10490 ubermenu-item-level-4 ubermenu-column ubermenu-column-1-2 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-10490"><ul class="ubermenu-submenu ubermenu-submenu-id-10490 ubermenu-submenu-type-stack" ><li id="menu-item-10509" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-item-has-children ubermenu-level-5 ubermenu-item-10509 ubermenu-item-header ubermenu-item-level-5 ubermenu-column ubermenu-column-auto ubermenu-has-submenu-stack" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/christinas-lease-on-life/"><span class="ubermenu-target-title ubermenu-target-text">Patient stories</span></a><ul class="ubermenu-submenu ubermenu-submenu-id-10509 ubermenu-submenu-type-auto ubermenu-submenu-type-stack" ><li id="menu-item-10507" class="nav-img-block ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-10507 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-target-with-image ubermenu-item-layout-image_above" href="https://rarediseases.org/christinas-lease-on-life/"><img class="ubermenu-image ubermenu-image-size-full" src="https://rarediseases.org/wp-content/uploads/2022/06/Post-DBS-op-Me-eating-McDonalds-and-Loving-it-e1652280852247.jpg" srcset="https://rarediseases.org/wp-content/uploads/2022/06/Post-DBS-op-Me-eating-McDonalds-and-Loving-it-e1652280852247.jpg 554w, https://rarediseases.org/wp-content/uploads/2022/06/Post-DBS-op-Me-eating-McDonalds-and-Loving-it-e1652280852247-300x281.jpg 300w" sizes="(max-width: 554px) 100vw, 554px" width="554" height="518" alt="Person enjoying McDonald's after DBS surgery." /><span class="ubermenu-target-title ubermenu-target-text">Christina’s Lease on Life</span></a></li><li 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tabindex="0"><span class="ubermenu-target-title ubermenu-target-text">Living with a Rare Disease</span><i class='ubermenu-sub-indicator fas fa-angle-down'></i></a><div class="ubermenu-submenu ubermenu-submenu-id-151 ubermenu-submenu-type-auto ubermenu-submenu-type-mega ubermenu-submenu-drop ubermenu-submenu-align-full_width" aria-hidden="true"><ul class="ubermenu-row ubermenu-row-id-13576 ubermenu-autoclear "><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-2 ubermenu-advanced-sub ubermenu-item-13577 ubermenu-item-level-2 ubermenu-column ubermenu-column-full ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13577"><div class="ubermenu-submenu ubermenu-submenu-id-13577 ubermenu-submenu-type-stack" ><ul class="ubermenu-row ubermenu-row-id-13578 ubermenu-autoclear "><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children 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Patients</span></a></li><li id="menu-item-13700" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-4 ubermenu-item-13700 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-4 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/living-with-a-rare-disease/rare-disease-centers-of-excellence/"><span class="ubermenu-target-title ubermenu-target-text">Find a Rare Disease Care Center</span></a></li><li id="menu-item-13701" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-4 ubermenu-item-13701 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-4 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/living-with-a-rare-disease/continuing-medical-education-cme/"><span class="ubermenu-target-title ubermenu-target-text">Continuing Medical Education (CME)</span></a></li></ul></li></ul></li><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-2 ubermenu-item-13702 ubermenu-item-level-2 ubermenu-column ubermenu-column-1-5 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13702"><ul class="ubermenu-submenu ubermenu-submenu-id-13702 ubermenu-submenu-type-stack" ><li id="menu-item-13703" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-item-has-children ubermenu-level-3 ubermenu-item-13703 ubermenu-item-header ubermenu-item-level-3 ubermenu-column ubermenu-column-auto ubermenu-has-submenu-stack" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/advancing-research/iamrare-patient-registry-platform/"><span class="ubermenu-target-title ubermenu-target-text">Connect</span></a><ul class="ubermenu-submenu ubermenu-submenu-id-13703 ubermenu-submenu-type-auto ubermenu-submenu-type-stack" ><li id="menu-item-13704" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-4 ubermenu-item-13704 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-4 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/advancing-research/iamrare-patient-registry-platform/"><span class="ubermenu-target-title ubermenu-target-text">IAMRARE<sup>®</sup> Program Powered by NORD</span></a></li><li id="menu-item-13706" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-4 ubermenu-item-13706 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-4 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/rdca-dap/"><span class="ubermenu-target-title ubermenu-target-text">Rare Disease Cures Accelerator (RDCA-DAP)</span></a></li><li id="menu-item-13705" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-4 ubermenu-item-13705 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-4 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/living-with-a-rare-disease/add-your-expertise/"><span class="ubermenu-target-title ubermenu-target-text">Add Your Expertise</span></a></li></ul></li></ul></li><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-2 ubermenu-item-13707 ubermenu-item-level-2 ubermenu-column ubermenu-column-1-5 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13707"><ul class="ubermenu-submenu 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ubermenu-item-13718 ubermenu-item-header ubermenu-item-level-5 ubermenu-column ubermenu-column-auto ubermenu-has-submenu-stack" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/driving-policy/policy-issues/"><span class="ubermenu-target-title ubermenu-target-text">NORD policy and you</span></a><ul class="ubermenu-submenu ubermenu-submenu-id-13718 ubermenu-submenu-type-auto ubermenu-submenu-type-stack" ><li id="menu-item-99048" class="ubermenu-item ubermenu-item-type-post_type ubermenu-item-object-page ubermenu-current-menu-item ubermenu-page_item ubermenu-page-item-99046 ubermenu-current_page_item ubermenu-level-6 ubermenu-item-99048 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/driving-policy/public-policy-positions/"><span class="ubermenu-target-title ubermenu-target-text">Public Policy Positions</span></a></li><li id="menu-item-13720" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-13720 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/driving-policy/policy-statements/"><span class="ubermenu-target-title ubermenu-target-text">Policy Statements & Letters to Policymakers</span></a></li><li id="menu-item-88595" class="ubermenu-item ubermenu-item-type-post_type ubermenu-item-object-page ubermenu-level-6 ubermenu-item-88595 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/rare-disease-advisory-councils/"><span class="ubermenu-target-title ubermenu-target-text">Rare Disease Advisory Councils</span></a></li><li id="menu-item-13722" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-13722 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/driving-policy/nord-state-report-card/"><span class="ubermenu-target-title ubermenu-target-text">NORD State Report Card</span></a></li></ul></li></ul></li><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-4 ubermenu-item-13724 ubermenu-item-level-4 ubermenu-column ubermenu-column-1-2 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13724"><ul class="ubermenu-submenu ubermenu-submenu-id-13724 ubermenu-submenu-type-stack" ><li 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href="https://rarediseases.org/driving-policy/join-the-rareaction-network/"><span class="ubermenu-target-title ubermenu-target-text">Join the Rare Action Network®</span></a></li><li id="menu-item-13727" class="ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-13727 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/driving-policy/policy-taskforce/"><span class="ubermenu-target-title ubermenu-target-text">Policy & Advocacy Taskforce</span></a></li><li id="menu-item-98724" class="ubermenu-item ubermenu-item-type-post_type ubermenu-item-object-page ubermenu-level-6 ubermenu-item-98724 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/driving-policy/take-action/"><span class="ubermenu-target-title ubermenu-target-text">Take Action on Key Issues</span></a></li></ul></li></ul></li></ul></div></li><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-2 ubermenu-advanced-sub ubermenu-item-13733 ubermenu-item-level-2 ubermenu-column ubermenu-column-1-2 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13733"><div class="ubermenu-submenu ubermenu-submenu-id-13733 ubermenu-submenu-type-stack" ><ul class="ubermenu-row ubermenu-row-id-13734 ubermenu-autoclear "><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-4 ubermenu-item-13735 ubermenu-item-level-4 ubermenu-column ubermenu-column-1-2 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13735"><ul class="ubermenu-submenu 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image" /><span class="ubermenu-target-title ubermenu-target-text">Learn about our current policy goals</span></a></li><li id="menu-item-13738" class="ubermenu-button ubermenu-item ubermenu-item-type-custom ubermenu-item-object-custom ubermenu-level-6 ubermenu-item-13738 ubermenu-item-auto ubermenu-item-normal ubermenu-item-level-6 ubermenu-column ubermenu-column-auto" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/driving-policy/public-policy-positions/nord-action-on-inflation-reduction-act-ira/"><span class="ubermenu-target-title ubermenu-target-text">Take Action</span></a></li></ul></li></ul></li></ul></div></li></ul></div></li><li id="menu-item-155" class="ubermenu-item ubermenu-item-type-post_type ubermenu-item-object-page ubermenu-item-has-children ubermenu-level-0 ubermenu-advanced-sub ubermenu-item-155 ubermenu-item-level-0 ubermenu-column ubermenu-column-auto ubermenu-has-submenu-drop ubermenu-has-submenu-mega" ><a class="ubermenu-target ubermenu-item-layout-default ubermenu-item-layout-text_only" href="https://rarediseases.org/get-involved/" tabindex="0"><span class="ubermenu-target-title ubermenu-target-text">Get Involved</span><i class='ubermenu-sub-indicator fas fa-angle-down'></i></a><div class="ubermenu-submenu ubermenu-submenu-id-155 ubermenu-submenu-type-auto ubermenu-submenu-type-mega ubermenu-submenu-drop ubermenu-submenu-align-full_width" aria-hidden="true"><ul class="ubermenu-row ubermenu-row-id-13743 ubermenu-autoclear "><li class=" ubermenu-item ubermenu-item-type-custom ubermenu-item-object-ubermenu-custom ubermenu-item-has-children ubermenu-level-2 ubermenu-item-13744 ubermenu-item-level-2 ubermenu-column ubermenu-column-1-5 ubermenu-has-submenu-stack ubermenu-item-type-column ubermenu-column-id-13744"><ul class="ubermenu-submenu ubermenu-submenu-id-13744 ubermenu-submenu-type-stack" ><li id="menu-item-110706" class="ubermenu-item 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<div class="ad-content"><a href="https://learn.rarediseases.org/rare-disease-courses/?utm_source=website_sidebar&utm_medium=sidebar_ad&utm_campaign=rdorg_sidebar_promo&utm_id=Rare+Disease+Drug+Development+Promotions+2024" target="_blank" id="rdd-sidebar-ad" rel="noopener"><img src="https://rarediseases.org/wp-content/uploads/2024/11/rare-disease-drug-development-tile-ad-r02-1024x1024.png" alt="NORD rare disease drug development ad." width="1024" height="1024" class="alignnone size-large wp-image-274180" /></a></div> <div class="ad-content"><a href="https://rarediseases.org/state-resource-center/"><img src="https://rarediseases.org/wp-content/uploads/2024/05/NRD-2326-State-Resource-Center_Sidebar-01.png" alt="NORD State Resource Center Sidebar photo." width="500" height="573" class="aligncenter size-full wp-image-260046" /></a></div> </div> </section> </div> </div> <div class="col-lg-9 col-12 main-content"> <section class="fcl fcl-sidebar-menu hide-left-resp theme-default no-mt no-mr sm-mb no-ml no-pt no-pr no-pb no-pl"><div class="inner"><h4 class="widget-title">Explore More</h4> <div class="sidebar-nav"> <div class="nav-wrapper"> <p class="menu-title js-sub-nav d-lg-none d-block">Section</p> <div class="sidebar-menu-wrapper"><ul id="menu-sidebar-menu-policy-1" class="sidebar-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page current-page-ancestor current-page-parent level-0 menu-item-91249"><a href="https://rarediseases.org/driving-policy/">Driving Policy</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-99046 current_page_item level-0 menu-item-99216"><a href="https://rarediseases.org/driving-policy/public-policy-positions/" aria-current="page">Public Policy Positions</a></li> <li class="menu-item menu-item-type-custom menu-item-object-custom level-0 menu-item-254041"><a href="https://rarediseases.org/driving-policy/nord-policy-statements/">Policy Statements & Letters to 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Report Card®</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-107593"><a href="https://rarediseases.org/driving-policy/policy-taskforce/">Policy & Advocacy Taskforce</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-91265"><a href="https://rarediseases.org/driving-policy/join-the-rareaction-network/">RareAction Network<sup>®</sup></a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page level-0 menu-item-98726"><a href="https://rarediseases.org/driving-policy/take-action/">Take Action on Key Issues</a></li> </ul></div> </div> </div> </div></section> <section class="fcl fcl-sb-wysiwyg theme-default no-mt no-mr med-mb no-ml no-pt no-pr no-pb no-pl"><div class="inner"> <div class="content"> <p><img decoding="async" src="https://rarediseases.org/wp-content/uploads/2022/09/NORD_NEWS_USAGovt_1024x384.jpg" alt="" width="1024" height="384" /></p> <h1>Public Policy Positions</h1> <h2>What We Advocate For:</h2> <p>Since its establishment in 1983, the National Organization for Rare Disorders has advocated for policy changes to improve the lives of Americans impacted by rare diseases at the federal and state levels. NORD continues this critical work to this day. <a href="https://rarediseases.org/driving-policy/policy-statements/">Read more about our policy positions on this page.</a></p> <p><a class="more-link" href="https://rarediseases.org/wp-content/uploads/2024/02/Policy-Priorities-2024.pdf">Learn more about NORD’s policy priorities for 2024</a></p> <hr /> <h3>Reauthorizing the Rare Pediatric Disease Priority Review Voucher (PRV) Program</h3> <p>As many as half of all people living with a rare disease are children, and <a href="https://rarediseases.org/rare-pediatric-disease-prv-program/">rare pediatric disease priority review vouchers (PRVs)</a> offer a crucial incentive for companies to develop therapies for these particularly challenging patient populations. <strong>NORD is urging Congress to reauthorize this vital program in its current form before the September 30, 2024 deadline</strong> in order to maintain an important tool in ongoing efforts to address the significant unmet treatment needs of the pediatric rare disease population.</p> <p><a class="more-link" href="https://rarediseases.org/rare-pediatric-disease-prv-program/">Learn more about NORD’s position on Rare Pediatric Disease Priority Review Vouchers (PRVs) here</a></p> <hr /> <h3>Ensuring Affordability of Prescription Drugs Under the Inflation Reduction Act</h3> <p>For the first time, due to the Inflation Reduction Act, the Centers for Medicare & Medicaid Services (CMS) will be able to negotiate the prices of certain prescription drugs. This will have significant impacts for some rare disease patients on their ability to afford needed treatments but could also impact broader rare disease drug development by disincentivizing orphan drug research. NORD is taking a leading role to ensure this law ultimately benefits patients and families living with rare disease. <a href="https://rarediseases.org/wp-content/uploads/2023/04/FINAL_Rare-Disease-Patient-Organization-Sign-On-Letter-to-CMS-on-MDPNP-4.14.23-1.pdf">We sent a letter to CMS</a> signed by more than 100 member organizations, detailing the concerns of the rare community. <a href="https://www.youtube.com/watch?v=-7MA-KSf1Bk">We hosted a webinar</a> with senior leadership from the Centers for Medicare & Medicaid Services where we asked some of our most pressing questions about the implementation of the Inflation Reduction Act. And NORD President and CEO Peter L. Saltonstall wrote an <a href="https://rarediseases.org/wp-content/uploads/2024/02/STATOp-ed.pdf">op-ed in the journal STAT</a> about the need for Congress to create exemptions for orphan drugs.</p> <p><a class="more-link" href="https://rarediseases.org/driving-policy/public-policy-positions/inflation-reduction-act-ira-nord-point-of-view/">View NORD’s positions on the Inflation Reduction Act and download our helpful infographic here</a></p> <hr /> <h3>Protecting Patients by Opposing the Promising Pathway Act</h3> <p>The Promising Pathway Act 2.0 (PPA 2.0) would create a new conditional approval pathway at FDA, allowing companies to sell certain rare disease drugs for children and adults before appropriate clinical trials are completed to show a product is safe and effective. NORD is concerned the bill jeopardizes patient safety and will negatively impact current and future patients’ ability to access safe and effective treatments. We issued a <a href="https://rarediseases.org/nord-issues-statement-on-recently-introduced-promising-pathway-act/" target="_blank" rel="noopener">statement of opposition</a> on an earlier version of the bill, submitted a <a href="https://rarediseases.org/wp-content/uploads/2023/11/NORD-Statement-for-the-Record-PPA-11.02.2023.pdf" target="_blank" rel="noopener">statement for the record</a> to the Senate Aging Committee, and have hosted listening sessions with our patient advocacy member organizations to explain our position. While NORD opposes PPA 2.0, we are committed to collaborating with any individual or organization in pursuit of effective public policy that will increase patient access to safe and effective rare disease treatment options.</p> <p>Learn more about NORD’s position in our <a href="https://rarediseases.org/wp-content/uploads/2024/07/NORD-Position-One-Pager_Promising-Pathway-Act-2.0-S.4426-1.pdf" target="_blank" rel="noopener">one-pager</a>.</p> <hr /> <h3>Advancing Rare Disease Research and Innovation</h3> <p>More than 90% of rare diseases lack an FDA approved treatment. NORD was founded by advocates who helped to pass the Orphan Drug Act, which provides key incentives to spur the development of treatments for rare diseases. It is critical that the research and regulatory environment helps to address continued barriers for rare disease drug development and foster a successful bench to bedside pathway for rare disease treatments. <strong>NORD advocates on policies such as:</strong></p> <ul> <li>Protecting the Orphan Drug Act</li> <li>Adequate funding for research and innovation at the NIH, FDA, and other agencies</li> <li>Patient focused drug development</li> <li>Improving clinical trials to reflect the unique needs of patients with rare disorders</li> </ul> <p>Recently, in The Milbank Quarterly, NORD President Peter L. Saltonstall, Vice President of Policy and Regulatory Affairs Heidi Ross, MPH, and former Henry Waxman staffer Paul Kim documented the renaissance in rare disease drug development sparked by the Orphan Drug Act and responded to subsequent critiques of prescription drug pricing that followed the launch of “blockbuster” orphan drugs. <a href="https://onlinelibrary.wiley.com/doi/epdf/10.1111/1468-0009.12680?domain=author&token=RF6SMYYYHYEXARBG3KFG">Read the full article here.</a></p> <p><a class="more-link" href="https://rarediseases.org/?s=&filter_policy_statement_year%5B%5D=Select+an+option&filter_policy_statement_category%5B%5D=research&filter_policy_statement_issue_type%5B%5D=Select+an+option&tax_array=policy_statement_year%257Cpolicy_statement_category%257Cpolicy_statement_issue_type&post_type=policy-statement&order=DESC&orderby=relevance&posts_per_page=12&compare=">Learn more about our work on advancing rare disease research and innovation by visiting our policy statements here</a></p> <hr /> <h3>Access to Affordable Comprehensive Health Care</h3> <p>Patients with rare disorders often find their financial lives upended by the debilitating nature of their diseases, and on their behalf, NORD is committed to ensuring access to affordable, comprehensive health care coverage. <strong>NORD advocates on policies such as:</strong></p> <ul> <li>Protecting the Affordable Care Act</li> <li>Access to comprehensive care and treatment through state Medicaid programs</li> <li>Access to comprehensive and affordable care and treatment through Medicare</li> <li>Access to expert care across state lines</li> <li>Better medical nutrition coverage at the state level and through advocacy for the Medical Nutrition Equity Act</li> <li>Reducing patient out-of-pocket prescription drug costs</li> <li>Battling against the expansion of “junk insurance”</li> <li>Ending surprise medical billing</li> <li>Protecting patients from inappropriate step therapy and utilization management</li> </ul> <p><a class="more-link" href="https://rarediseases.org/?s=&filter_policy_statement_year%5B%5D=Select+an+option&filter_policy_statement_category%5B%5D=access-to-care&filter_policy_statement_issue_type%5B%5D=Select+an+option&tax_array=policy_statement_year%257Cpolicy_statement_category%257Cpolicy_statement_issue_type&post_type=policy-statement&order=DESC&orderby=relevance&posts_per_page=12&compare=">Learn more about our work on access to diagnostics by visiting our policy statements here</a></p> <hr /> <h3>Preventing a Diagnostic Odyssey</h3> <p>Many rare disease patients face years of a difficult “diagnostic odyssey” before receiving their correct diagnosis. Obtaining an early and accurate diagnosis is critical for allowing patients to seek effective treatment sooner. For instance, newborn screening programs have been improving and saving the lives of children across the United States through the early identification of diseases that cause permanent disability or death if not treated early. For other patients with rare disorders, genetic testing holds the hope of a timely diagnosis and effective, targeted treatment, but access and affordability is currently a limiting factor. <strong>NORD advocates on policies such as:</strong></p> <ul> <li>Genetic testing</li> <li>Newborn screening</li> </ul> <p><a class="more-link" href="https://rarediseases.org/?s=&filter_policy_statement_year%5B%5D=Select+an+option&filter_policy_statement_category%5B%5D=genetic-testing&filter_policy_statement_issue_type%5B%5D=Select+an+option&tax_array=policy_statement_year%257Cpolicy_statement_category%257Cpolicy_statement_issue_type&post_type=policy-statement&order=DESC&orderby=relevance&posts_per_page=12&compare=">Learn more about our work on access to diagnostics by visiting our policy statements here</a></p> <hr /> <h3>Project RDAC</h3> <p>A Rare Disease Advisory Council (RDAC) is an advisory body providing a platform for the rare community to have a stronger voice in state government. RDACs address the needs of rare patients and families by giving stakeholders an opportunity to make recommendations to state leaders on critical issues including the need for increased awareness, diagnostic tools and access to affordable treatments and cures. NORD’s Project RDAC is designed to optimize the existing RDACs and to increase the number of RDACs across the country. Under this initiative, NORD provides opportunities for the RDACs to collaborate with each other on a regular basis, creates educational resources to guide RDACs at every step of their journey, and helps states pass legislation to create high functioning RDACs.</p> <p><a class="more-link" href="https://rarediseases.org/rare-disease-advisory-councils/">Learn more about Project RDAC and learn how to get involved here</a></p> <hr /> <h3>Other Issues of Importance to the Rare Disease Community</h3> <p>People with rare diseases face many challenges, including traveling significant distances, often across state lines to find a health care provider knowledgeable about their specific rare disease and the need to take time off to attend numerous medical appointments or care for a loved one with a rare disease. Additionally, the COVID-19 pandemic has had significant impacts on our community. <strong>NORD advocates on policies such as:</strong></p> <ul> <li><a href="https://rarediseases.org/driving-policy/telehealth-principles/">Telehealth (NORD’s telehealth policy principles can be viewed here)</a></li> <li>Rare disease community needs during COVID-19</li> <li>Paid family and caregiver leave</li> </ul> <p><a class="more-link" href="https://rarediseases.org/driving-policy/policy-statements/">Learn more about our work on maximizing patient access to health care and treatment by visiting our policy statements here</a></p> </div> </div></section> </div> </div></div></section> <script nitro-exclude> document.cookie = 'nitroCachedPage=' + (!window.NITROPACK_STATE ? 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gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_20_8" ><label class='gfield_label gform-field-label' for='input_20_8'>I show my stripes for...<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></label><div class='gfield_description' id='gfield_description_20_8'>Max. 5 words</div><div class='ginput_container ginput_container_text'><input name='input_8' id='input_20_8' type='text' value='' class='large' aria-describedby="gfield_description_20_8" aria-required="true" aria-invalid="false" /></div></div><div id="field_20_12" class="gfield gfield--type-post_custom_field gfield--input-type-fileupload gfield--width-full gfield_contains_required field_sublabel_below gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_20_12" ><label class='gfield_label gform-field-label' for='gform_browse_button_20_12'>Photo<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></label><div class='gfield_description' id='gfield_description_20_12'>Max file size 5MB. Min. image size 260px X 260px</div><div class='ginput_container ginput_container_fileupload'><div id='gform_multifile_upload_20_12' data-settings='{"runtimes":"html5,flash,html4","browse_button":"gform_browse_button_20_12","container":"gform_multifile_upload_20_12","drop_element":"gform_drag_drop_area_20_12","filelist":"gform_preview_20_12","unique_names":true,"file_data_name":"file","url":"https:\/\/rarediseases.org\/?gf_page=13d885829505677","flash_swf_url":"https:\/\/rarediseases.org\/wp-includes\/js\/plupload\/plupload.flash.swf","silverlight_xap_url":"https:\/\/rarediseases.org\/wp-includes\/js\/plupload\/plupload.silverlight.xap","filters":{"mime_types":[{"title":"Allowed Files","extensions":"*"}],"max_file_size":"5242880b"},"multipart":true,"urlstream_upload":false,"multipart_params":{"form_id":20,"field_id":12},"gf_vars":{"max_files":0,"message_id":"gform_multifile_messages_20_12","disallowed_extensions":["php","asp","aspx","cmd","csh","bat","html","htm","hta","jar","exe","com","js","lnk","htaccess","phtml","ps1","ps2","php3","php4","php5","php6","py","rb","tmp"]}}' class='gform_fileupload_multifile'> <div id='gform_drag_drop_area_20_12' class='gform_drop_area gform-theme-field-control'> <span class='gform_drop_instructions'>Drop files here or </span> <button type='button' id='gform_browse_button_20_12' class='button gform_button_select_files gform-theme-button gform-theme-button--control' aria-describedby="gfield_upload_rules_20_12 gfield_description_20_12" >Select files</button> </div> </div><span class='gfield_description gform_fileupload_rules' id='gfield_upload_rules_20_12'>Max. file size: 5 MB.</span><ul class='validation_message--hidden-on-empty gform-ul-reset' id='gform_multifile_messages_20_12'></ul> <!-- Leave <ul> empty to support CSS :empty selector. --></div><div id='gform_preview_20_12' class='ginput_preview_list'></div></div><div id="field_20_11" class="gfield gfield--type-post_custom_field gfield--input-type-textarea gfield--width-full gfield_contains_required field_sublabel_below gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_20_11" ><label class='gfield_label gform-field-label' for='input_20_11'>Your Message<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></label><div class='gfield_description' id='gfield_description_20_11'>Max. 15 words</div><div class='ginput_container ginput_container_textarea'><textarea name='input_11' id='input_20_11' class='textarea small' aria-describedby="gfield_description_20_11" aria-required="true" aria-invalid="false" rows='10' cols='50'></textarea></div></div><fieldset id="field_20_13" class="gfield gfield--type-consent gfield--type-choice gfield--input-type-consent gfield--width-full gfield_contains_required field_sublabel_below gfield--has-description field_description_below field_validation_below gfield_visibility_visible" data-js-reload="field_20_13" ><legend class='gfield_label gform-field-label gfield_label_before_complex' >Consent<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></legend><div class='ginput_container ginput_container_consent'><input name='input_13.1' id='input_20_13_1' type='checkbox' value='1' aria-describedby="gfield_consent_description_20_13" aria-required="true" aria-invalid="false" /> <label class="gform-field-label gform-field-label--type-inline gfield_consent_label" for='input_20_13_1' >I agree to the terms and conditions</label><input type='hidden' name='input_13.2' value='I agree to the terms and conditions' class='gform_hidden' /><input type='hidden' name='input_13.3' value='5' class='gform_hidden' /></div><div class='gfield_description gfield_consent_description' id='gfield_consent_description_20_13'>In these Standard Terms and Conditions, “Your Content” refers to any audio, video, text, images, or other material you provide or display. By providing “Your Content”, you grant NORD a license to read, use, reproduce, adapt, modify, publish, translate, and distribute the content in our marketing materials and to all media. “Your Content” must be your own and must not invade any third‐party’s rights. When you submit content or information to NORD, you are allowing the public to access and use that information, and to associate it with you. NORD reserves the right to remove “Your Content” at any time, without notice. We take your privacy very seriously. Subject to the Terms and Conditions above, NORD will never sell or disclose your personal information.</div></fieldset><div id="field_20_14" class="gfield gfield--type-honeypot gform_validation_container field_sublabel_below gfield--has-description field_description_below field_validation_below gfield_visibility_visible" data-js-reload="field_20_14" ><label class='gfield_label gform-field-label' for='input_20_14'>Email</label><div class='ginput_container'><input name='input_14' id='input_20_14' type='text' value='' autocomplete='new-password'/></div><div class='gfield_description' id='gfield_description_20_14'>This field is for validation purposes and should be left unchanged.</div></div></div></div> <div class='gform-footer gform_footer top_label'> <input type='submit' id='gform_submit_button_20' class='gform_button button' onclick='gform.submission.handleButtonClick(this)' value='Submit' /> <input type='hidden' name='gform_ajax' value='form_id=20&title=&description=&tabindex=0&theme=gravity-theme' /> <input type='hidden' class='gform_hidden' name='gform_submission_method' data-js='gform_submission_method_20' value='iframe' /> <input type='hidden' class='gform_hidden' name='is_submit_20' value='1' /> <input type='hidden' class='gform_hidden' name='gform_submit' value='20' /> <input type='hidden' class='gform_hidden' name='gform_unique_id' value='' /> <input type='hidden' class='gform_hidden' name='state_20' value='WyJ7XCIxMy4xXCI6XCI0OTMzOGI5MWYxY2Y3ZDJkYTZkODc2M2M4MmYzNTYyZVwiLFwiMTMuMlwiOlwiZmJhNTJmMWMwMDVhMGQ5NmNiZWQyOGI3ZWNlNDZhMWNcIixcIjEzLjNcIjpcIjU2ZmE4YmZjMzQxOGZlZjcwMWRmZGYzNzdhMDFjZTljXCJ9IiwiOTIyNTRkYjZmYTIzZmVmN2I3YWY4NWUwZjNjNjMxODUiXQ==' /> <input type='hidden' autocomplete='off' class='gform_hidden' name='gform_target_page_number_20' id='gform_target_page_number_20' value='0' /> <input type='hidden' autocomplete='off' class='gform_hidden' name='gform_source_page_number_20' id='gform_source_page_number_20' value='1' /> <input type='hidden' name='gform_field_values' value='' /> <input type='hidden' name='gform_uploaded_files' id='gform_uploaded_files_20' value='' /> </div> </form> </div> <iframe style='display:none;width:0px;height:0px;' src='about:blank' name='gform_ajax_frame_20' id='gform_ajax_frame_20' title='This iframe contains the logic required to handle Ajax powered Gravity Forms.'></iframe> <script type="text/javascript"> /* <![CDATA[ */ gform.initializeOnLoaded( function() {gformInitSpinner( 20, 'https://rarediseases.org/wp-content/plugins/gravityforms/images/spinner.svg', true );jQuery('#gform_ajax_frame_20').on('load',function(){var contents = jQuery(this).contents().find('*').html();var is_postback = contents.indexOf('GF_AJAX_POSTBACK') >= 0;if(!is_postback){return;}var form_content = jQuery(this).contents().find('#gform_wrapper_20');var is_confirmation = jQuery(this).contents().find('#gform_confirmation_wrapper_20').length > 0;var is_redirect = contents.indexOf('gformRedirect(){') >= 0;var is_form = form_content.length > 0 && ! is_redirect && ! is_confirmation;var mt = parseInt(jQuery('html').css('margin-top'), 10) + parseInt(jQuery('body').css('margin-top'), 10) + 100;if(is_form){jQuery('#gform_wrapper_20').html(form_content.html());if(form_content.hasClass('gform_validation_error')){jQuery('#gform_wrapper_20').addClass('gform_validation_error');} else {jQuery('#gform_wrapper_20').removeClass('gform_validation_error');}setTimeout( function() { /* delay the scroll by 50 milliseconds to fix a bug in chrome */ jQuery(document).scrollTop(jQuery('#gform_wrapper_20').offset().top - mt); }, 50 );if(window['gformInitDatepicker']) {gformInitDatepicker();}if(window['gformInitPriceFields']) {gformInitPriceFields();}var current_page = jQuery('#gform_source_page_number_20').val();gformInitSpinner( 20, 'https://rarediseases.org/wp-content/plugins/gravityforms/images/spinner.svg', true );jQuery(document).trigger('gform_page_loaded', [20, current_page]);window['gf_submitting_20'] = false;}else if(!is_redirect){var confirmation_content = jQuery(this).contents().find('.GF_AJAX_POSTBACK').html();if(!confirmation_content){confirmation_content = contents;}jQuery('#gform_wrapper_20').replaceWith(confirmation_content);jQuery(document).scrollTop(jQuery('#gf_20').offset().top - mt);jQuery(document).trigger('gform_confirmation_loaded', [20]);window['gf_submitting_20'] = false;wp.a11y.speak(jQuery('#gform_confirmation_message_20').text());}else{jQuery('#gform_20').append(contents);if(window['gformRedirect']) {gformRedirect();}}jQuery(document).trigger("gform_pre_post_render", [{ formId: "20", currentPage: "current_page", abort: function() { this.preventDefault(); } }]); if (event && event.defaultPrevented) { return; } const gformWrapperDiv = document.getElementById( "gform_wrapper_20" ); if ( gformWrapperDiv ) { const visibilitySpan = document.createElement( "span" ); visibilitySpan.id = "gform_visibility_test_20"; gformWrapperDiv.insertAdjacentElement( "afterend", visibilitySpan ); } const visibilityTestDiv = document.getElementById( "gform_visibility_test_20" ); let postRenderFired = false; function triggerPostRender() { if ( postRenderFired ) { return; } postRenderFired = true; jQuery( document ).trigger( 'gform_post_render', [20, current_page] ); gform.utils.trigger( { event: 'gform/postRender', native: false, data: { formId: 20, currentPage: current_page } } ); gform.utils.trigger( { event: 'gform/post_render', native: false, data: { formId: 20, currentPage: current_page } } ); if ( visibilityTestDiv ) { visibilityTestDiv.parentNode.removeChild( visibilityTestDiv ); } } function debounce( func, wait, immediate ) { var timeout; return function() { var context = this, args = arguments; var later = function() { timeout = null; if ( !immediate ) func.apply( context, args ); }; var callNow = immediate && !timeout; clearTimeout( timeout ); timeout = setTimeout( later, wait ); if ( callNow ) func.apply( context, args ); }; } const debouncedTriggerPostRender = debounce( function() { triggerPostRender(); }, 200 ); if ( visibilityTestDiv && visibilityTestDiv.offsetParent === null ) { const observer = new MutationObserver( ( mutations ) => { mutations.forEach( ( mutation ) => { if ( mutation.type === 'attributes' && visibilityTestDiv.offsetParent !== null ) { debouncedTriggerPostRender(); observer.disconnect(); } }); }); observer.observe( document.body, { attributes: true, childList: false, subtree: true, attributeFilter: [ 'style', 'class' ], }); } else { triggerPostRender(); } } );} ); /* ]]> */ </script> </div> <button type="button" class="pum-close popmake-close" aria-label="Close"> × </button> </div> </div> <div id="pum-257855" role="dialog" aria-modal="false" class="pum pum-overlay pum-theme-11442 pum-theme-content-only popmake-overlay click_open" data-popmake="{"id":257855,"slug":"rdd-community-stripes","theme_id":11442,"cookies":[],"triggers":[{"type":"click_open","settings":{"cookie_name":"","extra_selectors":""}}],"mobile_disabled":null,"tablet_disabled":null,"meta":{"display":{"stackable":false,"overlay_disabled":false,"scrollable_content":false,"disable_reposition":false,"size":"medium","responsive_min_width":"0%","responsive_min_width_unit":false,"responsive_max_width":"70%","responsive_max_width_unit":false,"custom_width":"640px","custom_width_unit":false,"custom_height":"380px","custom_height_unit":false,"custom_height_auto":false,"location":"center","position_from_trigger":false,"position_top":"100","position_left":"0","position_bottom":"0","position_right":"0","position_fixed":false,"animation_type":"fade","animation_speed":"350","animation_origin":"center top","overlay_zindex":false,"zindex":"1999999999"},"close":{"text":"","button_delay":"0","overlay_click":false,"esc_press":false,"f4_press":false},"click_open":[]}}"> <div id="popmake-257855" class="pum-container popmake theme-11442 pum-responsive pum-responsive-medium responsive size-medium"> <div class="pum-content popmake-content" tabindex="0"> <div class='gf_browser_ie gf_browser_ie7 gform_wrapper gravity-theme gform-theme--no-framework' data-form-theme='gravity-theme' data-form-index='0' id='gform_wrapper_35' ><div id='gf_35' class='gform_anchor' tabindex='-1'></div><form method='post' enctype='multipart/form-data' target='gform_ajax_frame_35' id='gform_35' action='/driving-policy/public-policy-positions/#gf_35' data-formid='35' novalidate><div class="nitro-exclude"><input type="hidden" id="g-recaptcha-response" name="g-recaptcha-response" /><script nitro-exclude> <input type='hidden' class='gforms-pum' value='{"closepopup":false,"closedelay":0,"openpopup":false,"openpopup_id":0}' /> grecaptcha.ready(function() { grecaptcha.execute("6Lc_CEopAAAAACjj_tyibG1kHMOp5bOEly7_pvZb", {action: "submit"}).then(function(token) { var recaptchaResponse = document.getElementById("g-recaptcha-response"); if (recaptchaResponse) { recaptchaResponse.value = token; } }); }); </script></div> <div class='gform-body gform_body'><div id='gform_fields_35' class='gform_fields top_label form_sublabel_above description_above validation_below'><fieldset id="field_35_1" class="gfield gfield--type-name gfield--input-type-name gfield_contains_required field_sublabel_above gfield--no-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_35_1" ><legend class='gfield_label gform-field-label gfield_label_before_complex' >Name<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></legend><div class='ginput_complex ginput_container ginput_container--name no_prefix has_first_name no_middle_name has_last_name no_suffix gf_name_has_2 ginput_container_name gform-grid-row' id='input_35_1'> <span id='input_35_1_3_container' class='name_first gform-grid-col gform-grid-col--size-auto' > <label for='input_35_1_3' class='gform-field-label gform-field-label--type-sub '>First</label> <input type='text' name='input_1.3' id='input_35_1_3' value='' aria-required='true' autocomplete="given-name" /> </span> <span id='input_35_1_6_container' class='name_last gform-grid-col gform-grid-col--size-auto' > <label for='input_35_1_6' class='gform-field-label gform-field-label--type-sub '>Last</label> <input type='text' name='input_1.6' id='input_35_1_6' value='' aria-required='true' autocomplete="family-name" /> </span> </div></fieldset><fieldset id="field_35_2" class="gfield gfield--type-email gfield--input-type-email gfield_contains_required field_sublabel_above gfield--no-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_35_2" ><legend class='gfield_label gform-field-label gfield_label_before_complex' >Email<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></legend><div class='ginput_complex ginput_container ginput_container_email gform-grid-row' id='input_35_2_container'> <span id='input_35_2_1_container' class='ginput_left gform-grid-col gform-grid-col--size-auto'> <label for='input_35_2' class='gform-field-label gform-field-label--type-sub '>Enter Email</label> <input class='' type='email' name='input_2' id='input_35_2' value='' aria-required="true" aria-invalid="false" autocomplete="email"/> </span> <span id='input_35_2_2_container' class='ginput_right gform-grid-col gform-grid-col--size-auto'> <label for='input_35_2_2' class='gform-field-label gform-field-label--type-sub '>Confirm Email</label> <input class='' type='email' name='input_2_2' id='input_35_2_2' value='' aria-required="true" aria-invalid="false" autocomplete="email"/> </span> <div class='gf_clear gf_clear_complex'></div> </div></fieldset><div id="field_35_4" class="gfield gfield--type-fileupload gfield--input-type-fileupload gfield--width-full field_sublabel_above gfield--no-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_35_4" ><label class='gfield_label gform-field-label' for='gform_browse_button_35_4'>Photos</label><div class='ginput_container ginput_container_fileupload'><div id='gform_multifile_upload_35_4' data-settings='{"runtimes":"html5,flash,html4","browse_button":"gform_browse_button_35_4","container":"gform_multifile_upload_35_4","drop_element":"gform_drag_drop_area_35_4","filelist":"gform_preview_35_4","unique_names":true,"file_data_name":"file","url":"https:\/\/rarediseases.org\/?gf_page=13d885829505677","flash_swf_url":"https:\/\/rarediseases.org\/wp-includes\/js\/plupload\/plupload.flash.swf","silverlight_xap_url":"https:\/\/rarediseases.org\/wp-includes\/js\/plupload\/plupload.silverlight.xap","filters":{"mime_types":[{"title":"Allowed Files","extensions":"jpeg,png,jpg"}],"max_file_size":"3145728b"},"multipart":true,"urlstream_upload":false,"multipart_params":{"form_id":35,"field_id":4},"gf_vars":{"max_files":0,"message_id":"gform_multifile_messages_35_4","disallowed_extensions":["php","asp","aspx","cmd","csh","bat","html","htm","hta","jar","exe","com","js","lnk","htaccess","phtml","ps1","ps2","php3","php4","php5","php6","py","rb","tmp"]}}' class='gform_fileupload_multifile'> <div id='gform_drag_drop_area_35_4' class='gform_drop_area gform-theme-field-control'> <span class='gform_drop_instructions'>Drop files here or </span> <button type='button' id='gform_browse_button_35_4' class='button gform_button_select_files gform-theme-button gform-theme-button--control' aria-describedby="gfield_upload_rules_35_4" >Select files</button> </div> </div><span class='gfield_description gform_fileupload_rules' id='gfield_upload_rules_35_4'>Accepted file types: jpeg, png, jpg, Max. file size: 3 MB.</span><ul class='validation_message--hidden-on-empty gform-ul-reset' id='gform_multifile_messages_35_4'></ul> <!-- Leave <ul> empty to support CSS :empty selector. --></div><div id='gform_preview_35_4' class='ginput_preview_list'></div></div><div id="field_35_3" class="gfield gfield--type-textarea gfield--input-type-textarea gfield_contains_required field_sublabel_above gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_35_3" ><label class='gfield_label gform-field-label' for='input_35_3'>Comments<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></label><div class='gfield_description' id='gfield_description_35_3'>Please let us know what's on your mind. Have a question for us? Ask away.</div><div class='ginput_container ginput_container_textarea'><textarea name='input_3' id='input_35_3' class='textarea medium' aria-describedby="gfield_description_35_3" maxlength='600' aria-required="true" aria-invalid="false" rows='10' cols='50'></textarea></div></div><div id="field_35_5" class="gfield gfield--type-honeypot gform_validation_container field_sublabel_above gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_35_5" ><label class='gfield_label gform-field-label' for='input_35_5'>Phone</label><div class='gfield_description' id='gfield_description_35_5'>This field is for validation purposes and should be left unchanged.</div><div class='ginput_container'><input name='input_5' id='input_35_5' type='text' value='' autocomplete='new-password'/></div></div></div></div> <div class='gform-footer gform_footer top_label'> <input type='submit' id='gform_submit_button_35' class='gform_button button' onclick='gform.submission.handleButtonClick(this)' value='Submit' /> <input type='hidden' name='gform_ajax' value='form_id=35&title=&description=&tabindex=0&theme=gravity-theme' /> <input type='hidden' class='gform_hidden' name='gform_submission_method' data-js='gform_submission_method_35' value='iframe' /> <input type='hidden' class='gform_hidden' name='is_submit_35' value='1' /> <input type='hidden' class='gform_hidden' name='gform_submit' value='35' /> <input type='hidden' class='gform_hidden' name='gform_unique_id' value='' /> <input type='hidden' class='gform_hidden' name='state_35' value='WyJbXSIsImRhODZkOTEyM2FhMDJkZTQxODJmNzc4MDBlYmM3NWVkIl0=' /> <input type='hidden' autocomplete='off' class='gform_hidden' name='gform_target_page_number_35' id='gform_target_page_number_35' value='0' /> <input type='hidden' autocomplete='off' class='gform_hidden' name='gform_source_page_number_35' id='gform_source_page_number_35' value='1' /> <input type='hidden' name='gform_field_values' value='' /> <input type='hidden' name='gform_uploaded_files' id='gform_uploaded_files_35' value='' /> </div> </form> </div> <iframe style='display:none;width:0px;height:0px;' src='about:blank' name='gform_ajax_frame_35' id='gform_ajax_frame_35' title='This iframe contains the logic required to handle Ajax powered Gravity Forms.'></iframe> <script type="text/javascript"> /* <![CDATA[ */ gform.initializeOnLoaded( function() {gformInitSpinner( 35, 'https://rarediseases.org/wp-content/plugins/gravityforms/images/spinner.svg', true );jQuery('#gform_ajax_frame_35').on('load',function(){var contents = jQuery(this).contents().find('*').html();var is_postback = contents.indexOf('GF_AJAX_POSTBACK') >= 0;if(!is_postback){return;}var form_content = jQuery(this).contents().find('#gform_wrapper_35');var is_confirmation = jQuery(this).contents().find('#gform_confirmation_wrapper_35').length > 0;var is_redirect = contents.indexOf('gformRedirect(){') >= 0;var is_form = form_content.length > 0 && ! is_redirect && ! is_confirmation;var mt = parseInt(jQuery('html').css('margin-top'), 10) + parseInt(jQuery('body').css('margin-top'), 10) + 100;if(is_form){jQuery('#gform_wrapper_35').html(form_content.html());if(form_content.hasClass('gform_validation_error')){jQuery('#gform_wrapper_35').addClass('gform_validation_error');} else {jQuery('#gform_wrapper_35').removeClass('gform_validation_error');}setTimeout( function() { /* delay the scroll by 50 milliseconds to fix a bug in chrome */ jQuery(document).scrollTop(jQuery('#gform_wrapper_35').offset().top - mt); }, 50 );if(window['gformInitDatepicker']) {gformInitDatepicker();}if(window['gformInitPriceFields']) {gformInitPriceFields();}var current_page = jQuery('#gform_source_page_number_35').val();gformInitSpinner( 35, 'https://rarediseases.org/wp-content/plugins/gravityforms/images/spinner.svg', true );jQuery(document).trigger('gform_page_loaded', [35, current_page]);window['gf_submitting_35'] = false;}else if(!is_redirect){var confirmation_content = jQuery(this).contents().find('.GF_AJAX_POSTBACK').html();if(!confirmation_content){confirmation_content = contents;}jQuery('#gform_wrapper_35').replaceWith(confirmation_content);jQuery(document).scrollTop(jQuery('#gf_35').offset().top - mt);jQuery(document).trigger('gform_confirmation_loaded', [35]);window['gf_submitting_35'] = false;wp.a11y.speak(jQuery('#gform_confirmation_message_35').text());}else{jQuery('#gform_35').append(contents);if(window['gformRedirect']) {gformRedirect();}}jQuery(document).trigger("gform_pre_post_render", [{ formId: "35", currentPage: "current_page", abort: function() { this.preventDefault(); } }]); if (event && event.defaultPrevented) { return; } const gformWrapperDiv = document.getElementById( "gform_wrapper_35" ); if ( gformWrapperDiv ) { const visibilitySpan = document.createElement( "span" ); visibilitySpan.id = "gform_visibility_test_35"; gformWrapperDiv.insertAdjacentElement( "afterend", visibilitySpan ); } const visibilityTestDiv = document.getElementById( "gform_visibility_test_35" ); let postRenderFired = false; function triggerPostRender() { if ( postRenderFired ) { return; } postRenderFired = true; jQuery( document ).trigger( 'gform_post_render', [35, current_page] ); gform.utils.trigger( { event: 'gform/postRender', native: false, data: { formId: 35, currentPage: current_page } } ); gform.utils.trigger( { event: 'gform/post_render', native: false, data: { formId: 35, currentPage: current_page } } ); if ( visibilityTestDiv ) { visibilityTestDiv.parentNode.removeChild( visibilityTestDiv ); } } function debounce( func, wait, immediate ) { var timeout; return function() { var context = this, args = arguments; 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if (recaptchaResponse) { recaptchaResponse.value = token; } }); }); </script></div> <div class='gform-body gform_body'><div id='gform_fields_33' class='gform_fields top_label form_sublabel_above description_above validation_below'><fieldset id="field_33_1" class="gfield gfield--type-name gfield--input-type-name gfield_contains_required field_sublabel_above gfield--no-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_33_1" ><legend class='gfield_label gform-field-label gfield_label_before_complex' >Name<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></legend><div class='ginput_complex ginput_container ginput_container--name no_prefix has_first_name no_middle_name has_last_name no_suffix gf_name_has_2 ginput_container_name gform-grid-row' id='input_33_1'> <span id='input_33_1_3_container' class='name_first gform-grid-col gform-grid-col--size-auto' > <label for='input_33_1_3' class='gform-field-label gform-field-label--type-sub '>First</label> <input type='text' name='input_1.3' id='input_33_1_3' value='' aria-required='true' autocomplete="given-name" /> </span> <span id='input_33_1_6_container' class='name_last gform-grid-col gform-grid-col--size-auto' > <label for='input_33_1_6' class='gform-field-label gform-field-label--type-sub '>Last</label> <input type='text' name='input_1.6' id='input_33_1_6' value='' aria-required='true' autocomplete="family-name" /> </span> </div></fieldset><fieldset id="field_33_2" class="gfield gfield--type-email gfield--input-type-email gfield_contains_required field_sublabel_above gfield--no-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_33_2" ><legend class='gfield_label gform-field-label gfield_label_before_complex' >Email<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></legend><div class='ginput_complex ginput_container ginput_container_email gform-grid-row' id='input_33_2_container'> <span id='input_33_2_1_container' class='ginput_left gform-grid-col gform-grid-col--size-auto'> <label for='input_33_2' class='gform-field-label gform-field-label--type-sub '>Enter Email</label> <input class='' type='email' name='input_2' id='input_33_2' value='' aria-required="true" aria-invalid="false" autocomplete="email"/> </span> <span id='input_33_2_2_container' class='ginput_right gform-grid-col gform-grid-col--size-auto'> <label for='input_33_2_2' class='gform-field-label gform-field-label--type-sub '>Confirm Email</label> <input class='' type='email' name='input_2_2' id='input_33_2_2' value='' aria-required="true" aria-invalid="false" autocomplete="email"/> </span> <div class='gf_clear gf_clear_complex'></div> </div></fieldset><div id="field_33_3" class="gfield gfield--type-textarea gfield--input-type-textarea gfield_contains_required field_sublabel_above gfield--has-description field_description_above field_validation_below gfield_visibility_visible" data-js-reload="field_33_3" ><label class='gfield_label gform-field-label' for='input_33_3'>Comments<span class="gfield_required"><span class="gfield_required gfield_required_text">(Required)</span></span></label><div class='gfield_description' id='gfield_description_33_3'>Please let us know what's on your mind. 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