{"id":5448,"date":"2024-02-29T13:07:54","date_gmt":"2024-02-29T12:07:54","guid":{"rendered":"https:\/\/sdsdeutschland.de\/?p=5448"},"modified":"2024-03-07T13:33:32","modified_gmt":"2024-03-07T12:33:32","slug":"rare-disease-day-2024","status":"publish","type":"post","link":"https:\/\/sdsdeutschland.de\/en\/2024\/02\/29\/rare-disease-day-2024\/","title":{"rendered":"RARE DISEASE DAY 2024"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container has-pattern-background has-mask-background nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1248px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-order-medium:0;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><h4>Heute ist Tag der seltenen Erkrankungen<\/h4>\n<p>Selten sind Viele und Seltenheit sollte kein Nachteil sein!<br \/>\n300 Millionen Menschen leben mit einer seltenen Erkrankung.<br \/>\nEs gibt mehr als 6000 seltene Erkrankungen weltweit, 72% davon sind genetisch bedingt, wie das Shwachman Diamond Syndrom.<br \/>\nDas Leben mit einer seltenen Erkrankung ist f\u00fcr die betroffenen Menschen eine gro\u00dfe Herausforderung und Belastung und zeigt meist einen Leidensweg mit wenig Lebensqualit\u00e4t.<br \/>\nNoch immer gibt es zuviele Fehldiagnosen, zu wenig richtige Behandlungswege und in den meisten F\u00e4llen keine Heilungschancen.<\/p>\n<p>Wir stehen f\u00fcr mehr Achtsamkeit, Aufkl\u00e4rung, Vernetzung und angepasste medizinische Versorgung!<\/p>\n<p>DANKE AN ALLE DIE UNS SO GROSSARTIG UND BEDINGUNGSLOS UNTERST\u00dcTZEN<\/p>\n<ul>\n<li>University Hospital T\u00fcbingen<\/li>\n<li>MyPred<\/li>\n<li>Bundesministerium f\u00fcr Bildung und Forschung<\/li>\n<li>Apollo Theater Stuttgart<\/li>\n<li>Art Support Stuttgart<\/li>\n<li>Berufsfeuerwehr Stuttgart<\/li>\n<li>Abenteuerland PUR D\u00fcsseldorf<\/li>\n<li>Palladium Theater Stuttgart<\/li>\n<li>evangelische Kirchengemeinde Neuenhaus<\/li>\n<li>unsere Familien und Freunde<\/li>\n<\/ul>\n<p>#rarediseaseday #seltensindviele #seltenheitsollkeinnachteilsein #rarediseaseawareness #dankef\u00fcreurensupport #vollekraftvoraus #shwachmandiamondsyndrom #selteneerkrankung #raredisease #helfen #aufkl\u00e4rung #wissenrettetleben #forschenhilftheilen #sdsdeutschlandev #alleinesindwirseltenzusammensindwirstark<\/p>\n<\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-1 fusion_builder_column_1_3 1_3 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:33.333333333333%;--awb-margin-top-large:0px;--awb-spacing-right-large:5.76%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:5.76%;--awb-width-medium:33.333333333333%;--awb-order-medium:0;--awb-spacing-right-medium:5.76%;--awb-spacing-left-medium:5.76%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-column-has-shadow fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-video fusion-selfhosted-video\" style=\"max-width:100%;\"><div class=\"video-wrapper\"><video playsinline=\"true\" width=\"100%\" style=\"object-fit: cover;\" muted=\"true\" loop=\"true\" preload=\"auto\" controls=\"1\"><source src=\"https:\/\/sdsdeutschland.de\/wp-content\/uploads\/2024\/03\/IMG_1984.mp4\" type=\"video\/mp4\">Sorry, your browser doesn&#039;t support embedded videos.<\/video><\/div><\/div><\/div><\/div><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-2 fusion_builder_column_1_3 1_3 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:33.333333333333%;--awb-margin-top-large:0px;--awb-spacing-right-large:5.76%;--awb-margin-bottom-large:20px;--awb-spacing-left-large:5.76%;--awb-width-medium:33.333333333333%;--awb-order-medium:0;--awb-spacing-right-medium:5.76%;--awb-spacing-left-medium:5.76%;--awb-width-small:100%;--awb-order-small:0;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div 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2200px) 100vw, (min-width: 784px) 391px, (min-width: 712px) 587px, (min-width: 640px) 712px, \" \/><\/a><\/div><\/div><\/div><div class=\"swiper-slide\"><div class=\"fusion-carousel-item-wrapper\"><div class=\"fusion-image-wrapper hover-type-none\"><a data-rel=\"iLightbox[image_carousel_1]\" data-title=\"IMG_2055\" aria-label=\"IMG_2055\" href=\"https:\/\/sdsdeutschland.de\/wp-content\/uploads\/2024\/03\/IMG_2055.jpg\" target=\"_self\"><img decoding=\"async\" width=\"1000\" height=\"1000\" src=\"https:\/\/sdsdeutschland.de\/wp-content\/uploads\/2024\/03\/IMG_2055.jpg\" class=\"attachment-full size-full\" alt=\"\" srcset=\"https:\/\/sdsdeutschland.de\/wp-content\/uploads\/2024\/03\/IMG_2055-200x200.jpg 200w, https:\/\/sdsdeutschland.de\/wp-content\/uploads\/2024\/03\/IMG_2055-400x400.jpg 400w, https:\/\/sdsdeutschland.de\/wp-content\/uploads\/2024\/03\/IMG_2055-600x600.jpg 600w, https:\/\/sdsdeutschland.de\/wp-content\/uploads\/2024\/03\/IMG_2055-800x800.jpg 800w, 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