{"id":3154,"date":"2025-02-28T05:40:00","date_gmt":"2025-02-28T05:40:00","guid":{"rendered":"https:\/\/miesnie.org.pl\/?p=3154"},"modified":"2025-03-10T17:44:11","modified_gmt":"2025-03-10T17:44:11","slug":"dzien-chorob-rzadkich-28-luty-2025-r","status":"publish","type":"post","link":"https:\/\/miesnie.org.pl\/?p=3154","title":{"rendered":"Dzie\u0144 Chor\u00f3b Rzadkich &#8211; 28 luty 2025 r."},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"3154\" class=\"elementor elementor-3154\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-764cfb2 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"764cfb2\" 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-8185cba\" data-id=\"8185cba\" 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-1131047 elementor-widget elementor-widget-text-editor\" data-id=\"1131047\" 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>Dzi\u015b obchodzimy <strong>Dzie\u0144 Chor\u00f3b Rzadkich<\/strong> \u2013 dzie\u0144, kt\u00f3ry ma na celu podniesienie \u015bwiadomo\u015bci o problemach, z jakimi borykaj\u0105 si\u0119 osoby cierpi\u0105ce na rzadkie schorzenia, oraz ich rodziny. Choroby rzadkie s\u0105 nie tylko wyzwaniem medycznym, ale tak\u017ce spo\u0142ecznym, emocjonalnym i finansowym.<br \/><br \/>My, w <strong>Polskim Towarzystwie Chor\u00f3b Nerwowo-Mi\u0119\u015bniowych Oddzia\u0142 Regionalny w \u0141odzi<\/strong>, codziennie dzia\u0142amy na rzecz wsparcia naszych podopiecznych, ich bliskich oraz ca\u0142ej spo\u0142eczno\u015bci dotkni\u0119tej tymi chorobami. Naszym celem jest poprawa jako\u015bci \u017cycia os\u00f3b cierpi\u0105cych na r\u00f3\u017cnorodne choroby nerwowo-mi\u0119\u015bniowe, takie jak dystrofie mi\u0119\u015bniowe (<strong>Duchenne\u2019a<\/strong>\/<strong>Beckera<\/strong>, <strong>Bethelma<\/strong>), rdzeniowy zanik mi\u0119\u015bni (<strong>SMA<\/strong>), <strong>miastenia<\/strong>, <strong>miopatie<\/strong>, <strong>polineuropatie<\/strong> (<strong>CIDP<\/strong>), stwardnienie zanikowe boczne (<strong>SLA<\/strong>) i <strong>inne<\/strong>. Choroby te wp\u0142ywaj\u0105 na codzienne funkcjonowanie naszych podopiecznych, odbieraj\u0105c im mo\u017cliwo\u015b\u0107 swobodnego poruszania si\u0119, a niekiedy tak\u017ce \u017cycia bez b\u00f3lu.<br \/><br \/>Dzia\u0142amy na wielu p\u0142aszczyznach \u2013 od edukacji i wsparcia psychologicznego po organizowanie zbi\u00f3rek funduszy na badania naukowe oraz innowacyjne terapie. <strong>Naszym marzeniem<\/strong> jest stworzenie \u015bwiata, w kt\u00f3rym ka\u017cdy pacjent z chorob\u0105 rzadk\u0105 b\u0119dzie mia\u0142 dost\u0119p do odpowiedniej opieki, wsparcia i mo\u017cliwo\u015bci leczenia.<br \/><br \/>W <strong>Dniu Chor\u00f3b Rzadkich<\/strong> pragniemy podzi\u0119kowa\u0107 wszystkim, kt\u00f3rzy wspieraj\u0105 nasz\u0105 misj\u0119 \u2013 wolontariuszom, darczy\u0144com, naukowcom, lekarzom oraz rodzinom naszych podopiecznych. Bez Waszego zaanga\u017cowania i po\u015bwi\u0119cenia nasza praca by\u0142aby niemo\u017cliwa.<br \/><br \/>Zach\u0119camy do odwiedzenia naszej strony internetowej [miesnie.org.pl] (<a href=\"https:\/\/miesnie.org.pl\" target=\"_blank\" rel=\"noopener\">https:\/\/miesnie.org.pl<\/a>) i zapoznania si\u0119 z nasz\u0105 dzia\u0142alno\u015bci\u0105. Razem mo\u017cemy zrobi\u0107 wi\u0119cej dla tych, kt\u00f3rzy potrzebuj\u0105 naszej pomocy. <strong>Dzi\u0119kujemy za Wasze wsparcie i zrozumienie.<\/strong> Razem mo\u017cemy zmienia\u0107 \u017cycie na lepsze!<\/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-44e799e elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"44e799e\" 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-69d4b1b\" data-id=\"69d4b1b\" 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-7ad9a07 elementor-widget elementor-widget-image\" data-id=\"7ad9a07\" 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=\"800\" height=\"567\" src=\"https:\/\/miesnie.org.pl\/wp-content\/uploads\/2025\/03\/dzien-chorob-rzadkich-2025-1024x726.jpg\" class=\"attachment-large size-large wp-image-3156\" alt=\"dzien-chorob-rzadkich-2025 | Dzie\u0144 Chor\u00f3b Rzadkich - 28 luty 2025 r. - Polskie Towarzystwo Chor\u00f3b Nerwowo-Mi\u0119\u015bniowych Oddzia\u0142 Regionalny w \u0141odzi\" srcset=\"https:\/\/miesnie.org.pl\/wp-content\/uploads\/2025\/03\/dzien-chorob-rzadkich-2025-1024x726.jpg 1024w, https:\/\/miesnie.org.pl\/wp-content\/uploads\/2025\/03\/dzien-chorob-rzadkich-2025-300x213.jpg 300w, https:\/\/miesnie.org.pl\/wp-content\/uploads\/2025\/03\/dzien-chorob-rzadkich-2025-768x545.jpg 768w, https:\/\/miesnie.org.pl\/wp-content\/uploads\/2025\/03\/dzien-chorob-rzadkich-2025-1536x1090.jpg 1536w, https:\/\/miesnie.org.pl\/wp-content\/uploads\/2025\/03\/dzien-chorob-rzadkich-2025.jpg 1748w\" sizes=\"(max-width: 800px) 100vw, 800px\" title=\"dzien-chorob-rzadkich-2025 | Dzie\u0144 Chor\u00f3b Rzadkich - 28 luty 2025 r. - Polskie Towarzystwo Chor\u00f3b Nerwowo-Mi\u0119\u015bniowych Oddzia\u0142 Regionalny w \u0141odzi\" \/>\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<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Dzi\u015b obchodzimy Dzie\u0144 Chor\u00f3b Rzadkich &#8211; Dzi\u0119kujemy za Wasze wsparcie i zrozumienie.<\/p>\n","protected":false},"author":4,"featured_media":2662,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-3154","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-inne"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Dzie\u0144 Chor\u00f3b Rzadkich - 28 luty 2025 r. - Polskie Towarzystwo Chor\u00f3b Nerwowo-Mi\u0119\u015bniowych Oddzia\u0142 Regionalny w \u0141odzi<\/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:\/\/miesnie.org.pl\/?p=3154\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Dzie\u0144 Chor\u00f3b Rzadkich - 28 luty 2025 r. - Polskie Towarzystwo Chor\u00f3b Nerwowo-Mi\u0119\u015bniowych Oddzia\u0142 Regionalny w \u0141odzi\" \/>\n<meta property=\"og:description\" content=\"Dzi\u015b obchodzimy Dzie\u0144 Chor\u00f3b Rzadkich - Dzi\u0119kujemy za Wasze wsparcie i zrozumienie.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/miesnie.org.pl\/?p=3154\" \/>\n<meta property=\"og:site_name\" content=\"Polskie Towarzystwo Chor\u00f3b Nerwowo-Mi\u0119\u015bniowych Oddzia\u0142 Regionalny w \u0141odzi\" \/>\n<meta property=\"article:published_time\" content=\"2025-02-28T05:40:00+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-03-10T17:44:11+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/miesnie.org.pl\/wp-content\/uploads\/2024\/07\/aktualnosci-logotypy-ptchnm.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"440\" \/>\n\t<meta property=\"og:image:height\" content=\"180\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"michal-c\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Napisane przez\" \/>\n\t<meta name=\"twitter:data1\" content=\"michal-c\" \/>\n\t<meta name=\"twitter:label2\" content=\"Szacowany czas czytania\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minuty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/miesnie.org.pl\\\/?p=3154#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/miesnie.org.pl\\\/?p=3154\"},\"author\":{\"name\":\"michal-c\",\"@id\":\"https:\\\/\\\/miesnie.org.pl\\\/#\\\/schema\\\/person\\\/b699c5367a113648ba708f7331f1b743\"},\"headline\":\"Dzie\u0144 Chor\u00f3b Rzadkich &#8211; 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