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.grid-container:after { content: ''; position: absolute; top: 0; left: 0; right: 0; bottom: 0; background: rgba(0, 0, 0, 0.5); z-index: 2; } #parallax .grid-container .cell { position: relative; z-index: 3; } #parallax .title, #parallax .summary p{ color: #fff; } #parallax .title{ font-weight: bold; } #parallax .btn-pill { color: #712885!important; } .page-template-black-pearl .wrapper-mobile-nav { background-color: rgb(113 40 133); } /* - - - - - - - - - - - */ /* class that allows top space */ .topspace { padding-top: 40px; } /* Box with overlay and text */ .containerflickr { position: relative; width: 90%; } .imageflickr { opacity: 1; display: block; width: 100%; height: auto; transition: .5s ease; backface-visibility: hidden; } .middleflickr { transition: .5s ease; opacity: 0; position: absolute; top: 50%; left: 50%; transform: translate(-50%, -50%); -ms-transform: translate(-50%, -50%); text-align: center; } .containerflickr:hover .imageflickr { opacity: 0.3; } .containerflickr:hover .middleflickr { opacity: 1; } .textflickr { background-color: #712886; color: white; font-size: 18px; padding: 16px 32px; border-radius: 30px; } /* purple card box with image album */ .responsive-banner1 { display: inline-block; margin: 0 auto; width: 100%; max-width: 490px; min-width: 300px; position: relative; min-height: 150px; max-height: 300px; border-radius: 10px; overflow: hidden; background-image: linear-gradient(to bottom right, #D45BA1, #A784E0); background-repeat: no-repeat; text-align: left; box-shadow: 0 3px 6px rgba(0,0,0,0.16), 0 3px 6px rgba(0,0,0,0.23); } .responsive-banner1:hover { opacity: 0.5; } .container-envelope1 { max-width: calc(100%); padding: 15px; color: #fff!important; display: -webkit-box; display: -webkit-flex; display: -ms-flexbox; display: flex; min-height: 150px; max-height: 300px; } .col-xs-121 { -webkit-box-flex: 0; -webkit-flex: 0 0 100%; -ms-flex: 0 0 100%; flex: 0 0 100%; max-width: 100%; -webkit-align-self: flex-end; -ms-flex-item-align: end; align-self: flex-end; } @media (min-width: 650px) { .col-xs-121 { -webkit-align-self: center; -ms-flex-item-align: center; align-self: center; } .container-envelope1 { max-width: calc(100% - 200px); } } .p2 { left: 15px; clear: both; text-transform: none; text-rendering: optimizeLegibility; font-weight: 600; line-height: 30px; word-wrap: break-word; text-align: left; margin:0; padding: 0; color: #fff!important; position: relative; word-wrap: break-word; font-size: 50px; text-transform: uppercase; } * { -webkit-box-sizing: border-box; -moz-box-sizing: border-box; box-sizing: border-box; } a.more-link1 { color: #fff; cursor: pointer; text-decoration: none!important; font-size: 1.2rem; padding: 1rem 2rem; text-align: center; border: none !important; } .svg1, .img1 { fill: rgba(0, 0, 0, 0.1); position: absolute; } .img1 { max-width : 100%; clip-path: polygon(66% 0, 100% 0, 100% 50%, 100% 100%, 0 100%, 40% 40%); top: -30px; left: 70px; } /* hide elements on mobile */ @media (max-width: 800px) { .hidden-mobile { display: none; } } /* purple image cards patrons BPA */ .containercard1{ background: linear-gradient(180deg, rgba(255,255,255,1) 10%, rgba(82,46,123,1) 100%); padding: 0px; display: flex; flex-direction: column; align-items: center; justify-content:center; text-align: center; margin-bottom: 20px; border-radius: 15px; } .containercard2{ background: linear-gradient(180deg, rgba(255,255,255,1) 10%, rgb(113, 40, 134) 100%); padding: 0px; display: flex; flex-direction: column; align-items: center; justify-content:center; text-align: center; margin-bottom: 20px; border-radius: 15px; } .containercard3{ background: linear-gradient(180deg, rgba(255,255,255,1) 10%, RGB(153, 120, 46) 100%); padding: 0px; display: flex; flex-direction: column; align-items: center; justify-content:center; text-align: center; margin-bottom: 20px; border-radius: 15px; } .containercard4{ background: linear-gradient(180deg, rgba(255,255,255,1) 10%, rgb(102, 73, 23) 100%); padding: 0px; display: flex; flex-direction: column; align-items: center; justify-content:center; text-align: center; margin-bottom: 20px; border-radius: 15px; } .gallerycard1 { width: 100%; } .banner-imagecard1{ border-radius: 15px; background-position: center; background-size: cover; height: 250px; width: 80%; margin: 0 auto; } .desccard1 { font-family: "sofia-pro",sans-serif; padding: 15px; text-align: center; color: #fff; height: 140px; } @media (max-width: 800px) { .desccard1 { height: 140px; } } /* Beyondwords player */ .beyondwords-player { margin: 30px 0px; } /* Initiatives box */ .initiative-table{ box-shadow: 0px 0px 18px #ccc; text-align: center; padding: 30px 30px; border-radius: 5px; height: auto; } .initiative-table .head { border-bottom:1px solid #eee; padding-bottom: 70px; transition: all 0.5s ease; } .initiative-table:hover .head{ border-bottom:1px solid #5DB7E1; } .initiative-table .head .title{ margin: 0 auto; text-align: center; } .initiative-table .content .price{ background:#FFF; width: 300px; height: 300px; margin: auto; border-radius: 50%; border: 5px solid #fff; box-shadow: 0px 0px 10px #ccc; margin-top: -50px; transition: all 0.5s ease; } .initiative-table:hover .content .price{ transform: scale(1.05); } .initiative-table .content p{ margin-bottom: 20px; padding: 20px; } .initiative-table .sign-up{ background:#E2388C; width: 200px; border-radius: 30px; font-weight: 500; position: relative; display: inline-block; padding: 16px; text-decoration: none; text-align: center; cursor: pointer; font-weight: 500; line-height: 1; } .initiative-table .sign-up a{ color: #fff!important; text-decoration: none; } @media (max-width: 800px) { .initiative-table{ height: auto; } .initiative-table .content p{ height: auto; } } /* Testing Stories */ /* .wrapper-stories .item{ position: relative!important; } .wrapper-stories .grid-container, .wrapper-stories .grid-x, .wrapper-stories .cell { height: auto; } .wrapper-stories .item { position: relative; height: auto; } */ .halfleft1 { border: 3px solid black; } /* Toolkit */ .toolkit .sticky-container { pointer-events: none; } .toolkit .owl-carousel .owl-item img:not(.resource-item .podcast img) { width: auto; } .toolkit .wrapper-section:last-of-type { padding-bottom: 0px; } .toolkit .wrapper-sticky .sticky-container { top: 4rem; } .toolkit .sticky-nav li:nth-child(2) .active { color: #ffa03f!important; } .toolkit .sticky-nav li:nth-child(2) .active:before { background-color: #ffa03f!important; border-color: #ffa03f!important; } .toolkit .sticky-nav li:nth-child(3) .active { color: #bdd542!important; } .toolkit .sticky-nav li:nth-child(3) .active:before { background-color: #bdd542!important; border-color: #bdd542!important; } .toolkit .sticky-nav li:nth-child(4) .active { color: #3bb858!important; } .toolkit .sticky-nav li:nth-child(4) .active:before { background-color: #3bb858!important; border-color: #3bb858!important; } .toolkit .sticky-nav li:nth-child(5) .active { color: #0aae5b!important; } .toolkit .sticky-nav li:nth-child(5) .active:before { background-color: #0aae5b!important; border-color: #0aae5b!important; } .toolkit .sticky-nav li:nth-child(6) .active { color: #1a87a0!important; } .toolkit .sticky-nav li:nth-child(6) .active:before { background-color: #1a87a0!important; border-color: #1a87a0!important; } .toolkit .sticky-nav li:nth-child(7) .active { color: #00b0e8!important; } .toolkit .sticky-nav li:nth-child(7) .active:before { background-color: #00b0e8!important; border-color: #00b0e8!important; } .toolkit .sticky-nav li:nth-child(8) .active { color: #1172be!important; } .toolkit .sticky-nav li:nth-child(8) .active:before { background-color: #1172be!important; border-color: #1172be!important; } .toolkit .sticky-nav li:nth-child(9) .active { color: #1257ab!important; } .toolkit .sticky-nav li:nth-child(9) .active:before { background-color: #1257ab!important; border-color: #1257ab!important; } .toolkit .resource-item .dec{ display: inline-block; margin-top: 5px; font-size: 14px; color: #333; } @media screen and (max-width:39.9375em){ .toolkit .resource-item .icon-box { height: 100px; width: 100%; float: none; margin-right: 0; margin-bottom: 10px; } .toolkit .resource-item--img-icon .icon-box img { max-height: 70px; } .toolkit .resource-item .podcast img { width: auto; height: 100px; } .toolkit .resource-item .img { height: 200px; width: 100%; float: none; margin-right: 0.8rem; margin-bottom: 15px; } } /* Home page in russian */ [lang="ru-RU"] .wrapper-infographic .stat-block .stat { font-size: 1.2rem; line-height: 1.1; } [lang="ru-RU"] .section-title { font-size: 2.6rem; } [lang="ru-RU"] .wrapper-hero--home .hero-title { font-size: 3rem; line-height: 1; } [lang="ru-RU"] .wrapper-infographic-mobile .stat-block .stat span { font-size: 1rem; line-height: 1; } [lang="ru-RU"] .wrapper-infographic-mobile .stat-block .stat { font-size: 1.2rem; line-height: 1; } @media screen and (max-width:39.9375em){ [lang="ru-RU"] .section-title { font-size: 1.2rem; } [lang="ru-RU"] .wrapper-hero--home .hero-title { font-size: 2rem; line-height: 1; } } </style> <link rel="stylesheet" id="asp-basic" href="https://www.eurordis.org/wp-content/cache/asp/style.basic-ho-is-po-no-da-co-au-ga-se-is.css?mq=K7MrSt" media="all" /><style id='asp-instance-2'>div[id*='ajaxsearchpro2_'] div.asp_loader,div[id*='ajaxsearchpro2_'] div.asp_loader *{box-sizing:border-box !important;margin:0;padding:0;box-shadow:none}div[id*='ajaxsearchpro2_'] div.asp_loader{box-sizing:border-box;display:flex;flex:0 1 auto;flex-direction:column;flex-grow:0;flex-shrink:0;flex-basis:28px;max-width:100%;max-height:100%;align-items:center;justify-content:center}div[id*='ajaxsearchpro2_'] div.asp_loader-inner{width:100%;margin:0 auto;text-align:center;height:100%}@-webkit-keyframes 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data-aos="short-fade-up"> <div class="breadcrumb">  <span property="itemListElement" typeof="ListItem"><a property="item" typeof="WebPage" title="Go to EURORDIS." href="https://www.eurordis.org" class="home" ><span property="name">Home</span></a><meta property="position" content="1"></span> \ <span property="itemListElement" typeof="ListItem"><a property="item" typeof="WebPage" title="Go to the Newsroom category archives." href="https://www.eurordis.org/category/newsroom/" class="taxonomy category" ><span property="name">Newsroom</span></a><meta property="position" content="2"></span> \ <span property="itemListElement" typeof="ListItem"><a property="item" typeof="WebPage" title="Go to the Member's Comment category archives." href="https://www.eurordis.org/category/newsroom/members-comment/" class="taxonomy category" ><span property="name">Member's Comment</span></a><meta property="position" content="3"></span> \ <span property="itemListElement" typeof="ListItem"><span property="name" class="post post-post current-item">“La Vida en Una Gota”: A Journey of Hope and Advocacy for Newborn Screening</span><meta property="url" content="https://www.eurordis.org/la-vida-en-una-gota-documentary/"><meta property="position" content="4"></span> </div> <h2>“La Vida en Una Gota”: A Journey of Hope and Advocacy for Newborn Screening</h2>January 2025<span class="date"></span><hr /> <figure class="wp-block-table is-style-stripes"><table class="has-fixed-layout"><tbody><tr><td><em>The below Member Comment article was shared with EURORDIS-Rare Diseases Europe by our member organisation, <a href="https://www.masvisibles.com/" target="_blank" rel="noreferrer noopener">MasVisibles</a>.</em></td></tr></tbody></table></figure> <div style="height:30px" aria-hidden="true" class="wp-block-spacer"></div> <p>The documentary <em>“<a href="https://lavidaenunagota.es/" target="_blank" rel="noreferrer noopener">La Vida en Una Gota</a>”</em> follows the inspiring journey of Judit, a young woman living with Glutaric Aciduria Type I (GA-I), as she travels across Spain to uncover the history of newborn screening programmes and seek answers to the pressing issue of inequity in access to these vital tests.</p> <p>Judit’s journey begins with a question that echoes throughout the film: Why is access to early diagnosis and life-saving treatment determined by the region in which a baby is born? As she explores this disparity, Judit meets two pioneers of newborn screening in Spain, Dr. Carmen Ugarte and Dr. Federico Mayor Zaragoza, whose tireless efforts laid the foundation for these critical programmes. Their insights provide a historical perspective on how far these initiatives have come and the challenges that remain in ensuring equitable access for all.</p> <p>The documentary also captures Judit’s poignant encounters with two other patients living with GA-I. These meetings highlight the stark contrast in their experiences and outcomes, differentiated by the timing of their diagnosis. One patient, diagnosed early through newborn screening, enjoys a significantly improved quality of life, while the other faces greater challenges due to a delayed diagnosis.</p> <p>Through Judit’s journey, <em>“La Vida en Una Gota”</em> delivers a powerful message: newborn screening and public health programmes are essential for early diagnosis and better outcomes for patients. This heartfelt documentary advocates for an expanded and equitable newborn screening programme, not only in Spain but as a universal standard of care.</p> <p>The film serves as a call to action, emphasising that investing in public health initiatives like newborn screening is not just a medical imperative – it is a matter of justice and equality for all children.</p> <p></p> </article> </div> </div> </div> </div> </main> <footer >  <div class="wrapper-newsletter"> <div class="grid-container"> <div class="grid-x grid-padding-x" data-aos="fade-in"> <div class="cell large-9 medium-8 text-center"> <p>Keep up to date with the latest news, events, and campaigns from EURORDIS</p> </div> <div class="cell large-3 medium-4 align-self-middle text-center"> <a class="btn-subscribe" href="/newsletter-signup/">Subscribe</a> </div> </div> </div> </div>  <div class="wrapper-sitemap"> <div class="grid-container"> <div class="grid-x grid-padding-x medium-up-3"> <div class="widget_text cell"><p class="title">Connect with Eurordis</p><div class="textwidget custom-html-widget"><ul class="menu simple horizontal social-links"> <li> <a href="https://www.facebook.com/eurordis" target="_blank"> <span class="sz-icon-facebook-square"></span> <span class="show-for-sr">Facebook</span> </a> </li> <li> <a href="https://twitter.com/eurordis" target="_blank"> <span class="sz-icon-twitter" ></span> <span class="show-for-sr">Twitter</span> </a> </li> <li> <a href="https://www.instagram.com/eurordis/" target="_blank"> <span class="sz-icon-instagram"></span> <span class="show-for-sr">Instagram</span> </a> </li> <li> <a href="https://www.linkedin.com/company/eurordis/" target="_blank"> <span class="sz-icon-linkedin-square" target="_blank"></span> <span class="show-for-sr">LinkedIn</span> </a> </li> </ul> <br /> </div></div> </div> </div> </div>  <div class="wrapper-strip"> <div class="grid-container"> <div class="grid-x grid-padding-x"> <div class="cell medium-2 medium-order-1 small-order-2 small-text-center">  </div> <div class="medium-10 medium-order-2 small-order-1 cell align-self-middle"> <nav role="navigation"> <ul class="menu align-right simple horizontal"><li id="menu-item-150420" class="menu-item menu-item-type-post_type menu-item-object-page menu-item-150420"><a href="https://www.eurordis.org/terms-conditions/">Terms & Conditions</a></li> <li id="menu-item-150421" class="menu-item menu-item-type-post_type menu-item-object-page menu-item-150421"><a href="https://www.eurordis.org/privacy-policy/">Privacy Policy</a></li> <li id="menu-item-150422" class="menu-item menu-item-type-post_type menu-item-object-page menu-item-150422"><a href="https://www.eurordis.org/cookie-policy/">Cookie Policy</a></li> </ul> </nav> </div> </div> </div> </div> </footer> <script type="text/javascript"> (function($) { $("tr.hidden").hide(); 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