{"id":4998,"date":"2021-04-18T12:47:50","date_gmt":"2021-04-18T10:47:50","guid":{"rendered":"https:\/\/centroandaluzalfa1.org\/?p=4998"},"modified":"2022-02-17T18:42:46","modified_gmt":"2022-02-17T17:42:46","slug":"european-day-alpha1-2021","status":"publish","type":"post","link":"https:\/\/centroandaluzalfa1.org\/en\/european-day-alpha1-2021\/","title":{"rendered":"European Day Alpha 1"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"4998\" class=\"elementor elementor-4998\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-9a9ce03 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"9a9ce03\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-ee56e61\" data-id=\"ee56e61\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-71829d6 elementor-widget elementor-widget-text-editor\" data-id=\"71829d6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h3><span style=\"color: #00635b; font-family: Roboto, sans-serif;\"><span style=\"font-size: 30px; white-space: pre-wrap;\"><b>We celebrate the European day Alpha 1<\/b><\/span><\/span><\/h3>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-ccd9127 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"ccd9127\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-36fdbf9\" data-id=\"36fdbf9\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3158cd1 elementor-widget elementor-widget-heading\" data-id=\"3158cd1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Alpha 1 Deficiency as a rare disease<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b6003d9 elementor-widget elementor-widget-text-editor\" data-id=\"b6003d9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Alpha-1 antitrypsin deficiency (AATD) is one of these rare conditions that can significantly affect health and affect the quality of life of those who suffer from it.<\/p><p><span style=\"color: var( --e-global-color-text ); font-weight: var( --e-global-typography-text-font-weight );\">The population most at risk of serious complications needs special measures to prevent or reduce serious diseases and mortality.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e717a5a elementor-widget elementor-widget-image\" data-id=\"e717a5a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"1024\" height=\"369\" src=\"https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/EUWIZobXkAEE4Pd-1024x369.jpg\" class=\"attachment-large size-large wp-image-5002\" alt=\"\" srcset=\"https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/EUWIZobXkAEE4Pd-1024x369.jpg 1024w, https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/EUWIZobXkAEE4Pd-300x108.jpg 300w, https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/EUWIZobXkAEE4Pd-768x277.jpg 768w, https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/EUWIZobXkAEE4Pd.jpg 1200w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-bde11ed elementor-widget elementor-widget-text-editor\" data-id=\"bde11ed\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span style=\"color: #00635b;\"><b>Paradigm shift<\/b><\/span><\/p><p><b>Rare diseases are often a topic that is rarely discussed in society due to their relatively low prevalence.<\/b><\/p><p>The burden of such conditions is not about numbers, but about a person&#8217;s life, which can be significantly affected by delayed diagnosis and limited access to treatment.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e4e08f7 elementor-widget elementor-widget-text-editor\" data-id=\"e4e08f7\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span style=\"color: #00635b;\"><b>Diagnosis and treatment<\/b><\/span><\/p>\n<p><b>Without proper treatment and care, patients may have a shortened life expectancy and suffer severe shortness of breath, immobility, recurrent hospital admissions, and may eventually require a lung transplant.<\/b><\/p>\n<p>In addition to causing serious lung disease in adults, AATD can also cause liver damage in adults and children who may also require a liver transplant, and that is why today we want to publicize this chronic and inherited disease.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-d499424 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"d499424\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-7422a19\" data-id=\"7422a19\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-8de6144 elementor-widget elementor-widget-text-editor\" data-id=\"8de6144\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><span style=\"color: #00635b;\"><b>European Day Alpha 1<\/b><\/span><\/p><p><b>Today, April 25, 2021, we want to publicize this very common disease in individuals of Iberian and Northern European descent.<\/b><\/p><p><span style=\"color: var( --e-global-color-text );\">Despite its prevalence in Europe, patients and healthcare providers remain misinformed about the disorder, and therefore an overwhelming number of people are misdiagnosed as Alpha-1 patients.<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-016e3b4\" data-id=\"016e3b4\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-8024422 elementor-widget elementor-widget-image\" data-id=\"8024422\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"450\" height=\"450\" src=\"https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/european-day.jpg\" class=\"attachment-large size-large wp-image-4994\" alt=\"\" srcset=\"https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/european-day.jpg 450w, https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/european-day-300x300.jpg 300w, https:\/\/centroandaluzalfa1.org\/wp-content\/uploads\/2021\/04\/european-day-150x150.jpg 150w\" sizes=\"(max-width: 450px) 100vw, 450px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-77d405e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"77d405e\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-eece832\" data-id=\"eece832\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-f65c557 elementor-widget elementor-widget-text-editor\" data-id=\"f65c557\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h3>In search of the cure<\/h3>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f1c6d4c elementor-widget elementor-widget-text-editor\" data-id=\"f1c6d4c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"MsoNormal\"><i>Currently, Alpha-1 has no cure, however, there are treatments developed to coexist with this disease.<\/i><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-b1923a1 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"b1923a1\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-fd14d79\" data-id=\"fd14d79\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-57fe651 elementor-widget elementor-widget-heading\" data-id=\"57fe651\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Moving forward<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9ce1f17 elementor-widget elementor-widget-text-editor\" data-id=\"9ce1f17\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>One of the most progressive treatments for Alpha-1 affected patients is plasma-derived therapy to restore the normal level of AAT, which slows the progression of lung damage and cures panniculitis of the skin.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b291020 elementor-widget elementor-widget-text-editor\" data-id=\"b291020\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<blockquote><h3>Policies on Alpha-1 Diagnosis, Treatment, and Care<\/h3><\/blockquote><p>Policies vary across Europe, as each country has its own healthcare system and policy for rare diseases.<\/p><p><span style=\"color: var( --e-global-color-text );\">Despite the promising results and cost-effectiveness of augmentation therapy, only a few countries reimburse the treatment,<\/span><b style=\"color: var( --e-global-color-text );\"> fortunately Spain is one of them.<\/b><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3605774 elementor-widget elementor-widget-heading\" data-id=\"3605774\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\"><i>Recommendations<\/i><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e82a260 elementor-widget elementor-widget-text-editor\" data-id=\"e82a260\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Without timely diagnosis and proper treatment, the lives of many patients are at risk. Currently, AATD is a largely underrecognized and therefore underdiagnosed condition that requires immediate action by member state governments to improve the lives of those affected.<\/p><p><span style=\"color: var( --e-global-color-text ); font-weight: var( --e-global-typography-text-font-weight );\">Together with the European Alpha-1 Awareness Day and through the Recommendations of the European Alpha-1 Expert Group, the following is provided:<\/span><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7113e19 elementor-widget elementor-widget-text-editor\" data-id=\"7113e19\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<h3>Recommendations for Policy Makers<\/h3><ul><li>All Member States should develop an Alpha-1 diagnosis programme in their rare disease plan. The European Commission should develop a project to generate minimum credentials for Alpha-1 centres of excellence.<\/li><li>National paying agencies should develop reimbursement decisions by distinguishing Alpha-1 patients who are either those with rapid or non-declining lung function.<\/li><li>National governments should ensure that legislation does not deter individuals from genetic testing for rare diseases by ensuring that non-symptomatic patients do not have higher insurance premiums.<\/li><\/ul><h3>Recommendations for Healthcare Professionals (HCP)<\/h3><ul><li>HCPs should consider a diagnosis of Alpha-1 in patients with COPD, emphysema, adult onset bronchial asthma, bronchiectasis, unexplained liver disease, panniculitis, unexpected vasculitis and any patients with a family history of Alpha-1.<\/li><li>Centres of excellence should work through networks such as the European Reference Networks to share expertise, refer patients and educate healthcare professionals across Europe.<\/li><\/ul><h3>Recommendations for Individuals and Carers<\/h3><ul><li>If you have unexplained symptoms of lung, liver or skin disease, ask your doctor to be tested for Alpha-1.<\/li><li>Alpha-1 patients should adjust their lifestyles to reduce the chance of the onset, or aggravation of lung, liver or skin disease.<\/li><li>Alpha-1 patients and carers should seek support from the patient and\/or support groups.<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-dc8f9e4 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"dc8f9e4\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-66c3a7f\" data-id=\"66c3a7f\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-53ae9dd elementor-align-center elementor-widget elementor-widget-button\" data-id=\"53ae9dd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<div class=\"elementor-button-wrapper\">\n\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/centroandaluzalfa1.org\/noticias\/\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Read more news<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>We celebrate the European day Alpha 1 Alpha 1 Deficiency as a rare disease Alpha-1 antitrypsin deficiency (AATD) is one of these rare conditions that can significantly affect health and affect the quality of life of those who suffer from it. The population most at risk of serious complications needs special measures to prevent or [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":5000,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[64,66],"tags":[],"class_list":["post-4998","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-aatd-up-to-date","category-events-aatd"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - 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