{"id":41548,"date":"2026-03-18T10:23:45","date_gmt":"2026-03-18T09:23:45","guid":{"rendered":"https:\/\/confederaciopenyes.cat\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\/"},"modified":"2026-03-18T10:45:11","modified_gmt":"2026-03-18T09:45:11","slug":"pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda","status":"publish","type":"post","link":"https:\/\/confederaciopenyes.cat\/en\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\/","title":{"rendered":"PB Totana raises awareness of rare diseases at the CIS Guillermo Miranda"},"content":{"rendered":"\n

The Guillermo Miranda Social Integration Center<\/strong> hosted for the second consecutive year the 2nd Awareness Day on Rare Diseases, organized by the Pe\u00f1a Barcelonista de Totana<\/a> <\/strong>(Federaci\u00f3n de Pe\u00f1as de Murcia) as part of its \u201cSolidarity Dream\u201d project<\/strong>. The initiative, held to mark Rare Disease Day<\/a><\/strong>, is part of the various activities the supporters\u2019 club carries out within the penitentiary center with the aim of promoting social awareness, solidarity, and the reintegration process of people deprived of liberty. <\/p>\n\n

The event highlighted the work of the D\u2019Genes Rare Diseases Association and the International Association of Relatives and People Affected by Lipodystrophies<\/strong> (AELIP), which strive to improve the quality of life of people with rare diseases<\/strong> and their families. It also featured the emotional presence of first-person testimonies<\/strong>, including the father of a girl diagnosed with Phelan-McDermid syndrome and an adult patient affected by pigmentary retinitis. In addition, professionals and volunteers emphasized the importance of supporting families<\/strong> living with these uncommon conditions. <\/p>\n\n

Presentation of \u201cThe Odyssey\u201d<\/strong><\/h6>\n\n

One of the most moving moments of the day was the presentation of \u201cThe Odyssey,\u201d a story collectively created by residents of the CIS Guillermo Miranda<\/strong> to raise awareness of the difficult journey faced by many people living with rare diseases. This pioneering initiative was developed in the center\u2019s school and showcased the strong commitment of the residents, who demonstrated great respect and solidarity toward this cause. \u201cThe Odyssey\u201d symbolizes the long pilgrimage experienced by thousands of families from the appearance of the first symptoms until the disease is finally identified<\/strong>. <\/p>\n\n

The 2nd Awareness Day on Rare Diseases was presided over by Miriam P\u00e9rez<\/strong>, Director General for People with Disabilities of the Region of Murcia; Patricio Amor\u00f3s<\/strong>, Director of the CIS Guillermo Miranda; and Juan Carri\u00f3n<\/strong>, President of the D\u2019Genes Rare Diseases Association, the Spanish Federation of Rare Diseases (FEDER), and the Federaci\u00f3n de Pe\u00f1as de Murcia.<\/p>\n\n

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The Guillermo Miranda Social Integration Center hosted for the second consecutive year the 2nd Awareness Day on Rare Diseases, organized by the Pe\u00f1a Barcelonista de Totana (Federaci\u00f3n de Pe\u00f1as de Murcia) as part of its \u201cSolidarity Dream\u201d project. The initiative, held to mark Rare Disease Day, is part of the various activities the supporters\u2019 club … Read more<\/a><\/p>\n","protected":false},"author":4,"featured_media":41538,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[78],"tags":[4145,2599,2600,3931,2561,4248,2606],"class_list":["post-41548","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news-en","tag-cis-guillermo-miranda-en","tag-confederacio-mundial-de-penyes-en-3","tag-news-en-2","tag-pb-totana-en","tag-penyes-en","tag-rare-diseases","tag-solidarity-en-2"],"acf":[],"yoast_head":"\nPB Totana raises awareness of rare diseases - CMP<\/title>\n<meta name=\"description\" content=\"Success of the 2nd Awareness Day on Rare Diseases at the CIS Guillermo Miranda, organized by PB Totana\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/confederaciopenyes.cat\/en\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"PB Totana raises awareness of rare diseases at the CIS Guillermo Miranda\" \/>\n<meta property=\"og:description\" content=\"Success of the 2nd Awareness Day on Rare Diseases at the CIS Guillermo Miranda, organized by PB Totana\" \/>\n<meta property=\"og:url\" content=\"https:\/\/confederaciopenyes.cat\/en\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\/\" \/>\n<meta property=\"og:site_name\" content=\"Confederaci\u00f3 Mundial de Penyes del FC Barcelona\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/ConfederacioMundialPenyesFCB\" \/>\n<meta property=\"article:published_time\" content=\"2026-03-18T09:23:45+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-03-18T09:45:11+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/confederaciopenyes.cat\/wp-content\/uploads\/2026\/03\/WhatsApp-Image-2026-03-14-at-17.06.03.jpeg\" \/>\n\t<meta property=\"og:image:width\" content=\"1926\" \/>\n\t<meta property=\"og:image:height\" content=\"1083\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Confederaci\u00f3 Mundial de Penyes del FC Barcelona\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@ConfePenyesFCB\" \/>\n<meta name=\"twitter:site\" content=\"@ConfePenyesFCB\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Confederaci\u00f3 Mundial de Penyes del FC Barcelona\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\\\/\"},\"author\":{\"name\":\"Confederaci\u00f3 Mundial de Penyes del FC Barcelona\",\"@id\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/#\\\/schema\\\/person\\\/337072f6daef87a85aa59aa1f134387c\"},\"headline\":\"PB Totana raises awareness of rare diseases at the CIS Guillermo Miranda\",\"datePublished\":\"2026-03-18T09:23:45+00:00\",\"dateModified\":\"2026-03-18T09:45:11+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\\\/\"},\"wordCount\":334,\"publisher\":{\"@id\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/confederaciopenyes.cat\\\/wp-content\\\/uploads\\\/2026\\\/03\\\/WhatsApp-Image-2026-03-14-at-17.06.03.jpeg\",\"keywords\":[\"CIS Guillermo Miranda\",\"confederaci\u00f3 mundial de penyes\",\"news\",\"PB Totana\",\"penyes\",\"Rare Diseases\",\"solidarity\"],\"articleSection\":[\"News\"],\"inLanguage\":\"en-US\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\\\/\",\"url\":\"https:\\\/\\\/confederaciopenyes.cat\\\/en\\\/pb-totana-raises-awareness-of-rare-diseases-at-the-cis-guillermo-miranda\\\/\",\"name\":\"PB Totana raises awareness of rare diseases - 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