{"id":50,"date":"2018-02-27T15:25:08","date_gmt":"2018-02-27T15:25:08","guid":{"rendered":"https:\/\/www.ihelp.org.es\/blog\/?p=50"},"modified":"2019-06-18T09:59:49","modified_gmt":"2019-06-18T09:59:49","slug":"laminopatia-encontrar-una-cura-entre-todos","status":"publish","type":"post","link":"https:\/\/www.ihelp.org.es\/blog\/laminopatia-encontrar-una-cura-entre-todos\/","title":{"rendered":"Laminopat\u00eda, encontrar una cura entre todos"},"content":{"rendered":"<p>La Fundaci\u00f3n iHelp conmemora el D\u00eda Mundial de las Enfermedades Raras, 28 de febrero, de la mano de la <strong><a href=\"https:\/\/www.ihelp.org.es\/es\/ngo\/fundaci%C3%B3n-andr%C3%A9s-marcio-ni%C3%B1os-contra-la-laminopat%C3%ADa\" target=\"_blank\" rel=\"noopener noreferrer\">Fundaci\u00f3n Andr\u00e9s Marcio, ni\u00f1os contra la laminopat\u00eda<\/a><\/strong>. Nuestro objetivo es visibilizar esta enfermedad y conseguir fondos entre todos garantizar su tratamiento. \u00a1Te necesitamos para continuar con las investigaciones y garantizar la vida de los pacientes! Te contamos c\u00f3mo puedes ayudarles econ\u00f3micamente o creando tu reto solidario.<\/p>\n<div class=\"alineacion_btn\">\n<div class=\"btn_action\" style=\"text-align: center;\"><strong><a style=\"color: black;\" href=\"https:\/\/www.ihelp.org.es\/es\/project\/predictores-de-arritmias-card%C3%ADacas-y-muerte-s%C3%BAbita-en-pacientes-pedi%C3%A1tricos-enfermos-de\">Me gustar\u00eda ayudarles<\/a><\/strong><\/div>\n<\/div>\n<p>&nbsp;<\/p>\n<h2>Enfermedad rara entre las raras, la\u00a0laminopat\u00eda<\/h2>\n<p>El concepto de enfermedad rara engloba a todas aquellas\u00a0<b>enfermedades que afectan a un n\u00famero peque\u00f1o de personas<\/b>, aunque\u00a0tan solo en Espa\u00f1a\u00a0se estima que\u00a0afectan\u00a0a\u00a0m\u00e1s de 3\u00a0millones de personas.\u00a0Los s\u00edntomas y des\u00f3rdenes var\u00edan dependiendo de las 7.000 enfermedades raras que seg\u00fan la Organizaci\u00f3n Mundial de la Salud (OMS)\u00a0existen\u00a0en la actualidad\u00a0alrededor del mundo.<\/p>\n<p>Generalmente las enfermedades raras son\u00a0gen\u00e9ticas y de\u00a0dif\u00edcil\u00a0cura, principalmente porque al afectar a un porcentaje tan peque\u00f1o de la poblaci\u00f3n se dificulta su diagn\u00f3stico y las farmac\u00e9uticas no suelen\u00a0invertir\u00a0en investigaci\u00f3n.\u00a0<b>La\u00a0<\/b><b>laminopat\u00eda<\/b><b>\u00a0en concreto es una enfermedad degenerativ<\/b><b>a que a\u00fan no tiene cura<\/b>\u00a0y\u00a0que se caracteriza por\u00a0provocar\u00a0una\u00a0debilidad muscular severa\u00a0y\u00a0afectaci\u00f3n respiratoria y\u00a0card\u00edaca.<\/p>\n<p>Los ni\u00f1os que padecen\u00a0laminopat\u00eda\u00a0no suelen vivir m\u00e1s all\u00e1 de la adolescencia, debido\u00a0principalmente al elevado riesgo de morir por muerte s\u00fabita ya que su\u00a0coraz\u00f3n se vuelve m\u00e1s y m\u00e1s grande. Por ese motivo,\u00a0<b>han presentado el proyecto <a href=\"https:\/\/www.ihelp.org.es\/es\/project\/predictores-de-arritmias-card%C3%ADacas-y-muerte-s%C3%BAbita-en-pacientes-pedi%C3%A1tricos-enfermos-de\">\u00abPredictores de Arritmias Card\u00edabas y Muerte S\u00fabita en pacientes pedi\u00e1tricos enfermos de Laminopat\u00eda\u00bb<\/a> en nuestra plataforma<\/b>, solicitando fondos para financiar unos \u00abaparatitos\u00bb que lograr\u00e1n predecir y detectar las arritmias card\u00edacas en los ni\u00f1os.<\/p>\n<h2>\u00bfC\u00f3mo puedes ayudar?<\/h2>\n<p>El d\u00eda a d\u00eda\u00a0nos demuestra\u00a0que existen muchas\u00a0realidades muy diferentes\u00a0a la nuestra que pueden mejorar o incluso cambiar totalmente\u00a0solo con el apoyo de los dem\u00e1s. En el caso de las enfermedades raras, si quieres ayudarles tienes varias maneras:<\/p>\n<ol style=\"font-weight: 400;\">\n<li data-leveltext=\"%1.\" data-font=\"Calibri\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><b>Donar directamente a su proyecto<\/b>\u00a0la cantidad que creas necesaria o que puedas. Siempre repetimos que da igual si es mucho o poco, lo importante es ayudarles.<\/li>\n<li data-leveltext=\"%1.\" data-font=\"Calibri\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><b>Crear un reto\u00a0<\/b><b>asocia<\/b><b>do<\/b>. Dedicar tu cumple o un evento,\u00a0correr una marat\u00f3n&#8230; Las posibilidades son grandes y tan solo tendr\u00e1s que\u00a0plantearte\u00a0que quieres hacer para luego buscar fondos entre tus amigos y familia. Por ejemplo, varios\u00a0retistas\u00a0han creado\u00a0<a href=\"https:\/\/www.ihelp.org.es\/es\/ngo\/11q-espa%C3%B1a\"><b>retos solidarios para apoyar a 11Q Espa\u00f1a<\/b><\/a>\u00a0(una entidad que tambi\u00e9n lucha por las enfermedades raras), que pueden servirte de referencia para\u00a0crear el tuyo.<\/li>\n<li data-leveltext=\"%1.\" data-font=\"Calibri\" data-listid=\"2\" aria-setsize=\"-1\" data-aria-posinset=\"1\" data-aria-level=\"1\"><b>Da visibilidad<\/b>. Reenv\u00eda informaci\u00f3n sobre la\u00a0Laminopat\u00eda, cu\u00e9ntaselo a tus conocidos, intenta junto a la Fundaci\u00f3n Andr\u00e9s Marcio luchar por la calidad de vida y la investigaci\u00f3n de la enfermedad.<\/li>\n<\/ol>\n<p style=\"text-align: center;\"><img fetchpriority=\"high\" decoding=\"async\" class=\"size-full wp-image-68 aligncenter\" src=\"https:\/\/www.ihelp.org.es\/blog\/wp-content\/uploads\/2018\/11\/unnamed-1-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/www.ihelp.org.es\/blog\/wp-content\/uploads\/2018\/11\/unnamed-1-300x300.png 300w, https:\/\/www.ihelp.org.es\/blog\/wp-content\/uploads\/2018\/11\/unnamed-1-300x300-150x150.png 150w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><br \/>\n<img decoding=\"async\" class=\"size-full wp-image-69 aligncenter\" src=\"https:\/\/www.ihelp.org.es\/blog\/wp-content\/uploads\/2018\/11\/unnamed-3-300x300.png\" alt=\"\" width=\"300\" height=\"300\" srcset=\"https:\/\/www.ihelp.org.es\/blog\/wp-content\/uploads\/2018\/11\/unnamed-3-300x300.png 300w, https:\/\/www.ihelp.org.es\/blog\/wp-content\/uploads\/2018\/11\/unnamed-3-300x300-150x150.png 150w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/><br \/>\n<strong>#ay\u00fadanosaayudar<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>La Fundaci\u00f3n iHelp conmemora el D\u00eda Mundial de las Enfermedades Raras, 28 de febrero, de la mano de la Fundaci\u00f3n Andr\u00e9s Marcio, ni\u00f1os contra la laminopat\u00eda. Nuestro objetivo es visibilizar esta enfermedad y conseguir fondos entre todos garantizar su tratamiento. \u00a1Te necesitamos para continuar con las investigaciones y garantizar la vida de los pacientes! Te contamos c\u00f3mo puedes ayudarles econ\u00f3micamente o creando tu reto solidario&#8230;. <\/p>\n<p class=\"more\"><a class=\"more-link\" href=\"https:\/\/www.ihelp.org.es\/blog\/laminopatia-encontrar-una-cura-entre-todos\/\">Read More<\/a><\/p>\n","protected":false},"author":3,"featured_media":102,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"sfsi_plus_gutenberg_text_before_share":"","sfsi_plus_gutenberg_show_text_before_share":"","sfsi_plus_gutenberg_icon_type":"","sfsi_plus_gutenberg_icon_alignemt":"","sfsi_plus_gutenburg_max_per_row":"","footnotes":""},"categories":[2],"tags":[35,28,30,13,29,27,26,14,31,25,33,32,34],"class_list":["post-50","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-articulo","tag-11q-espana","tag-andres-marcio","tag-crowdfunding","tag-crowdfunding-solidario","tag-enfermedad-degenerativa","tag-enfermedad-rara","tag-enfermedades-raras","tag-fundraising","tag-ihelp","tag-laminopatia","tag-ong-enfermedades-raras","tag-proyecto-solidario","tag-reto-solidario"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Laminopat\u00eda, encontrar una cura entre todos -<\/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:\/\/www.ihelp.org.es\/blog\/laminopatia-encontrar-una-cura-entre-todos\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Laminopat\u00eda, encontrar una cura entre todos -\" \/>\n<meta property=\"og:description\" content=\"La Fundaci\u00f3n iHelp conmemora el D\u00eda Mundial de las Enfermedades Raras, 28 de febrero, de la mano de la Fundaci\u00f3n Andr\u00e9s Marcio, ni\u00f1os contra la laminopat\u00eda. Nuestro objetivo es visibilizar esta enfermedad y conseguir fondos entre todos garantizar su tratamiento. \u00a1Te necesitamos para continuar con las investigaciones y garantizar la vida de los pacientes! Te contamos c\u00f3mo puedes ayudarles econ\u00f3micamente o creando tu reto solidario.... 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