{"id":23910,"date":"2026-04-08T15:46:16","date_gmt":"2026-04-08T13:46:16","guid":{"rendered":"https:\/\/elainternational.eu\/?post_type=news&#038;p=23910"},"modified":"2026-04-23T15:11:21","modified_gmt":"2026-04-23T13:11:21","slug":"rare-disease-day-2026","status":"publish","type":"news","link":"https:\/\/elainternational.eu\/en\/actualites\/rare-disease-day-2026\/","title":{"rendered":"ELA raises awareness in favor of newborn screening"},"content":{"rendered":"\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <h2>ELA raises awareness in favor of newborn screening<\/h2>\n<p>On the occasion of International Rare Disease Day on February 28 2026, the 7 ELA European chapters <span class=\"TrackChangeTextInsertion TrackedChange SCXW67527456 BCX2\"><span class=\"TextRun SCXW67527456 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW67527456 BCX2\">carried out a newborn screening awareness campaign<\/span><\/span><\/span><span class=\"TextRun SCXW67527456 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW67527456 BCX2\">, coordinated by ELA International. Although <\/span><\/span><span class=\"TrackChangeTextInsertion TrackedChange SCXW67527456 BCX2\"><span class=\"TextRun SCXW67527456 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW67527456 BCX2\">newborn <\/span><\/span><\/span><span class=\"TextRun SCXW67527456 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW67527456 BCX2\">screening <\/span><\/span> <span class=\"TextRun SCXW67527456 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW67527456 BCX2\">for X-linked adrenoleukodystrophy or metachromatic leukodystrophy is already<\/span><\/span> implemented in some European countries, it is still not practiced in many regions, condemning children affected by these diseases.<\/p>\n<p><!--more--><\/p>\n<h3>Public opinion overwhelmingly supports newborn screening<\/h3>\n<p>In March 2025, ELA International commissioned an Ipsos BVA survey on newborn screening for leukodystrophies across all countries where ELA operates (Belgium, France, Germany, Italy, Luxembourg, Spain and Switzerland). The results are clear: the overwhelming majority of respondents are in favour of newborn screening for leukodystrophies, across all countries surveyed.<\/p>\n\n            <\/div>\n<\/div>\n\n\n\n\n\n    <style>\n        .single-image {\n            margin-bottom: 30px;\n        }\n\n        .heading4 {\n            margin-bottom: 30px;\n            font-size: 25px;\n            line-height: 27.5px;\n        }\n    <\/style>\n\n    <div class=\"container-content\">\n        <div class=\"single-image\" style=\"\">\n            <img decoding=\"async\" src=\"https:\/\/elainternational.eu\/wp-content\/uploads\/2026\/04\/Infographie-resultats-BVA-Ipsos-global-EN.jpg\" alt=\"\">\n        <\/div>\n        <h3 class=\"heading4\" style=\"\"><\/h3>\n    <\/div>\n\n\n\n\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <h3>An awareness campaign<\/h3>\n<p>In order to draw the attention of media and general public to the need to implement this screening, every ELA chapter across Europe carried out an awareness campaign targeting national press and social media.<\/p>\n<p>Over nearly two weeks, a series of posts focusing on newborn screening helped to explain the issues at stake, dispel common misconceptions, and address this crucial topic for ELA and families affected by the disease in an engaging and accessible way. These families also spoke out and shared their stories \u2013 often painful ones \u2013 about the delayed diagnosis of leukodystrophies and their dramatic consequences.<\/p>\n\n            <\/div>\n<\/div>\n\n\n\n\n\n\n\n\n\n<div class=\"videos\">\n    <div class=\"container-content-small\">\n        <div class=\"single-video-wrapper\">\n            <div class=\"grid grid-2\">\n                            <div class=\"grid-item\">\n                    <div class=\"video\">\n                        <iframe loading=\"lazy\" title=\"D\u00e9pistage n\u00e9onatal, les familles t\u00e9moignent - He\u0301le\u0300ne\" width=\"219\" height=\"389\" src=\"https:\/\/www.youtube.com\/embed\/XuwfWiVBuFM?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>                    <\/div>\n                    <div class=\"download\">\n                        <span>Testimony from H\u00e9l\u00e8ne, mother of Mathis who passed away from leukodystrophy (English subtitles available)<\/span>\n                                            <\/div>\n                <\/div>\n                            <div class=\"grid-item\">\n                    <div class=\"video\">\n                        <iframe loading=\"lazy\" title=\"D\u00e9pistage n\u00e9onatal, les familles t\u00e9moignent - Ce\u0301line\" width=\"640\" height=\"360\" src=\"https:\/\/www.youtube.com\/embed\/Ds_OUomgikI?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>                    <\/div>\n                    <div class=\"download\">\n                        <span>Testimony from C\u00e9line, mother of Nathana\u00ebl and Augustin, both affectd by a leukodystrophy (English subtitles available)<\/span>\n                                            <\/div>\n                <\/div>\n                        <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n\n\n\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <p><span class=\"TrackChangeTextInsertion TrackedChange TrackChangeHoverSelectColorBlue SCXW243319670 BCX2\"><span class=\"TextRun SCXW243319670 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun TrackChangeHoverSelectHighlightBlue SCXW243319670 BCX2\">T<\/span><\/span><\/span><span class=\"TrackChangeTextInsertion TrackedChange TrackChangeHoverSelectColorBlue SCXW243319670 BCX2\"><span class=\"TextRun SCXW243319670 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun TrackChangeHoverSelectHighlightBlue SCXW243319670 BCX2\">his was complemented by the distribution of a press release to national media, along with an infographic highlighting the main results of the survey. <\/span><\/span><\/span><span class=\"TextRun SCXW243319670 BCX2\" lang=\"EN-GB\" xml:lang=\"EN-GB\" data-contrast=\"auto\"><span class=\"NormalTextRun SCXW243319670 BCX2\">The infographic was also adapted into a carousel of images for use on social media.<\/span><\/span><\/p>\n\n            <\/div>\n<\/div>\n\n\n\n\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <p>At the time of writing, the press release has generated around twenty media placements, including fifteen in France across several national outlets (<em><strong>France Inter<\/strong><\/em>, <em><strong>France Info<\/strong><\/em>, <em><strong>Radio Classique<\/strong><\/em> and <em><strong>Doctissimo<\/strong><\/em>) as well as regional press and radio stations (<em><strong>L&#8217;Alsace<\/strong><\/em>, <em><strong>Derni\u00e8res Nouvelles d&#8217;Alsace<\/strong><\/em>). Other European coverage include <em><strong>L\u2019Essentiel<\/strong><\/em> in Luxembourg, <em><strong>L\u2019Avenir<\/strong><\/em> in Belgium, <em><strong>V-News<\/strong><\/em> in Italy and <em><strong>Kreiszeitung<\/strong> <\/em>in Germany, reaching an estimated total audience of 15.5 million people. Further initiatives are underway to continue raising public awareness of this key issue for ELA families across Europe.<\/p>\n\n            <\/div>\n<\/div>\n\n\n\n\n\n    <style>\n        .single-image {\n            margin-bottom: 30px;\n        }\n\n        .heading4 {\n            margin-bottom: 30px;\n            font-size: 25px;\n            line-height: 27.5px;\n        }\n    <\/style>\n\n    <div class=\"container-content\">\n        <div class=\"single-image\" style=\"\">\n            <img decoding=\"async\" src=\"https:\/\/elainternational.eu\/wp-content\/uploads\/2026\/04\/Coupures-presse-JIMR-scaled.jpg\" alt=\"\">\n        <\/div>\n        <h3 class=\"heading4\" style=\"\"><\/h3>\n    <\/div>\n\n\n\n\n\n<div class=\"single-button\">\n<div class=\"container-small\">\n    <a href=\"https:\/\/elainternational.eu\/en\/actualites\/newborn-screening-op-ed-140126\/\" target=\"\" class=\"btn-primary\">Read Guy Alba op-ed in Le Monde<\/a>\n<\/div>\n<\/div>\n\n\n\n\n<div class=\"block-wrapper\">\n    <div class=\"container-content\">\n        <p>The success of this campaign reminds us of the importance of collective action in going further and win the fight against leukodystrophies!<\/p>\n<h3>Together, the fight must go on.<\/h3>\n\n            <\/div>\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":6,"featured_media":23869,"parent":0,"template":"","news_categories":[97],"class_list":["post-23910","news","type-news","status-publish","has-post-thumbnail","hentry","news_categories-international-en"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.4 - 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