{"id":517,"date":"2022-09-13T11:50:41","date_gmt":"2022-09-13T09:50:41","guid":{"rendered":"https:\/\/petrilab.es\/diamundialdelasenfermedadesraras-numbers-with-their-own-name\/"},"modified":"2023-06-09T12:36:23","modified_gmt":"2023-06-09T10:36:23","slug":"diamundialdelasenfermedadesraras-numbers-with-their-own-name","status":"publish","type":"post","link":"https:\/\/petrilab.es\/en\/diamundialdelasenfermedadesraras-numbers-with-their-own-name\/","title":{"rendered":"DiaMundialdelasEnfermedadesRaras, numbers with their own name"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\"><strong>According to FEDER, <em>&#8220;rare diseases (RD) are diseases that have a low prevalence in the population. To be considered rare, each specific disease can only affect a limited number of people. Specifically, when it affects less than 5 per 10,000 inhabitants&#8221;.<\/em><\/strong><\/p>\n\n<p class=\"wp-block-paragraph\">Today, if we look at the data, we know that there are around 7,000 #EnfermedadesRaras; that approximately 7% of the world&#8217;s population suffers from one of them and that, in Spain, the number rises to 3,000,000 people. <\/p>\n\n<p class=\"wp-block-paragraph\">When we talk about the US everything seems to boil down to a number. <strong>However, in P\u00ebtri, everything focuses on one name:<\/strong> on Ana, diagnosed with haemophilia two years ago; on Pedro, diagnosed with Fabry disease since the age of 20; or on Carmen, who has suffered from hereditary angiodema for more than a decade. For us, it all comes down to the patients, the people and the need and ability to improve the diagnosis, approach and treatment of their pathologies.<\/p>\n\n<p class=\"wp-block-paragraph\"><strong>At P\u00ebtri, we work hand in hand with different agents of change, through the development of projects that help us to give greater visibility and generate knowledge about this type of disease.<\/strong><\/p>\n\n<p class=\"wp-block-paragraph\">That is why, in 2021, we helped write, map and design the Galician Health Service&#8217;s <a href=\"https:\/\/www.sergas.es\/Asistencia-sanitaria\/Estratexia-Galega-en-Enfermidades-Raras?idioma=es\" target=\"_blank\" rel=\"noreferrer noopener\">&#8220;Galician Strategy on Rare Diseases 2021-2024&#8221;<\/a>. An innovative, patient-centred strategy that opens the door to a new approach and model of care for RRH. in our community with the aim of improving people&#8217;s quality of life.<\/p>\n\n<p class=\"wp-block-paragraph\">Because, at P\u00ebtri, we know that what matters are not numbers, lists or statistics, but the people behind the data.<\/p>\n\n<p class=\"wp-block-paragraph\"><strong>Because they are less common, but not necessarily more invisible.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>According to FEDER, &#8220;rare diseases (RD) are diseases that have a low prevalence in the population. To be considered rare, each specific disease can only affect a limited number of people. Specifically, when it affects less than 5 per 10,000 inhabitants&#8221;. Today, if we look at the data, we know that there are around 7,000&hellip;<\/p>\n","protected":false},"author":1,"featured_media":462,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[29],"tags":[],"class_list":["post-517","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news","entry","has-media"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.1.1 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>DiaMundialdelasEnfermedadesRaras, numbers with their own name | P\u00ebtri<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/petrilab.es\/en\/diamundialdelasenfermedadesraras-numbers-with-their-own-name\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"DiaMundialdelasEnfermedadesRaras, numbers with their own name | P\u00ebtri\" \/>\n<meta property=\"og:description\" content=\"According to FEDER, &#8220;rare diseases (RD) are diseases that have a low prevalence in the population. To be considered rare, each specific disease can only affect a limited number of people. Specifically, when it affects less than 5 per 10,000 inhabitants&#8221;. Today, if we look at the data, we know that there are around 7,000&hellip;\" \/>\n<meta property=\"og:url\" content=\"https:\/\/petrilab.es\/en\/diamundialdelasenfermedadesraras-numbers-with-their-own-name\/\" \/>\n<meta property=\"og:site_name\" content=\"P\u00ebtri\" \/>\n<meta property=\"article:published_time\" content=\"2022-09-13T09:50:41+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-06-09T10:36:23+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/petrilab.es\/wp-content\/uploads\/2022\/09\/noticia-4.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1728\" \/>\n\t<meta property=\"og:image:height\" content=\"1728\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"recadoscarmen\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@SomosPetri\" \/>\n<meta name=\"twitter:site\" content=\"@SomosPetri\" \/>\n<meta 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