{"id":14767,"date":"2023-11-01T07:00:00","date_gmt":"2023-11-01T11:00:00","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=14767"},"modified":"2023-11-01T07:00:00","modified_gmt":"2023-11-01T11:00:00","slug":"supporting-the-spanish-speaking-community","status":"publish","type":"post","link":"https:\/\/panel.ptcbio.com\/es\/2023\/11\/01\/supporting-the-spanish-speaking-community\/","title":{"rendered":"Supporting the Spanish-Speaking Community"},"content":{"rendered":"\n<figure class=\"wp-block-image alignleft size-large is-resized is-style-lightbox\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/10\/Team-Brandon-Houston-768x1024.jpg\" alt=\"PTC and Team Brandon (Houston)\" class=\"wp-image-14770\" width=\"192\" height=\"256\"\/><button class=\"modal-toggle\" type=\"button\" data-bs-toggle=\"modal\" data-bs-target=\"#mg-image-modal\" aria-label=\"View image in lightbox\"><\/button><\/figure>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">The Patient Engagement (PE) team at PTC is passionate about education and support of a family\u2019s rare disease journey, and this commitment includes support for patients and their families in the Spanish-speaking community.<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">The team began meeting with the Spanish-speaking community in Puerto Rico more than five years ago, and realized there were minimal resources in Spanish. To fill this gap, PTC made educational materials are available in Spanish through the <a href=\"https:\/\/www.ptcbio.com\/momentos-de-claridad\/\" target=\"_blank\" rel=\"noreferrer noopener\">Momentos de Claridad<\/a> platform, and met with a small patient advocacy organization, The Akari Foundation, to work together in creating awareness in the community.<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">Additionally, to help Spanish-speaking families easily connect with PTC, the PE team has Spanish-speaking Patient Engagement Liaisons, Aurora Flores and Karina Lambertini. Aurora and Karina work directly with this community, providing support to create and implement programs, like webinars and in-person meetings, as well as educational materials and resources.<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">PTC has also worked hard to incorporate learnings about the cultural nuances of the community to ensure their needs are being met, especially as it relates to the way that they receive information. Another important part of PTC\u2019s support is to bring people together, so they can feel connected and know they are not alone.<\/p>\n\n\n\n<figure class=\"wp-block-image alignright size-full is-resized is-style-lightbox\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2023\/10\/Karina-and-Adrian.jpg\" alt=\"Karina and Adrian\" class=\"wp-image-14768\" width=\"192\" height=\"256\"\/><button class=\"modal-toggle\" type=\"button\" data-bs-toggle=\"modal\" data-bs-target=\"#mg-image-modal\" aria-label=\"View image in lightbox\"><\/button><\/figure>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">\u201cI feel very proud and happy when I see our Hispanic families at conferences or events as it is a big step for them. At these events, we can meet them in person and connect them with resources in the community,\u201d says Karina. \u201cFamilies see that we are there for the right reasons, that we are passionate about this community and want to help them raise their voices and feel empowered. My heart is full of hope for these families because they leave from these in-person events with new information and feel more connected to the community.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">For Aurora, this connection is critical. \u201cOftentimes when we first meet the families, they feel isolated, alone and unsupported,\u201d she says. \u201cWhen they connect with each other, they feel validated and are inspired by one another. The best part about an in-person meeting is when families meet each other and realize they are not alone in their journey. We build trust and relationships with these families, and soon they are turning to us for help with additional resources and information.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">Providing Spanish resources has had a tremendous impact on the community: from providing families with information to facilitating important conversations.<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">\u201cThe mother of a boy with Duchenne muscular dystrophy couldn&#8217;t find the words to explain his diagnosis to him, because everything was in English,\u00bb says Karina. \u201cWe have a coloring book that explains Duchenne in a simple way for kids that we had translated into Spanish. She told me that thanks to this book, she was finally able to explain the condition to her son. PTC helped fill a very important need for this family.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The Patient Engagement (PE) team at PTC is passionate about education and support of a family\u2019s rare disease journey, and this commitment includes support for patients and their families in the Spanish-speaking community. The team began meeting with the Spanish-speaking community in Puerto Rico more than five years ago, and realized there were minimal resources&hellip;<\/p>\n","protected":false},"author":0,"featured_media":14769,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5],"tags":[],"media-type":[20],"therapeutic-area":[26],"class_list":["post-14767","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.9 (Yoast SEO v27.9) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Supporting the Spanish-Speaking Community - PTC Therapeutics (Spain)<\/title>\n<meta name=\"description\" content=\"PTC\u2019s U.S. Patient Engagement team has worked hard to support patients and their families in the Spanish-speaking #raredisease community.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/panel.ptcbio.com\/es\/2023\/11\/01\/supporting-the-spanish-speaking-community\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Supporting the Spanish-Speaking Community\" \/>\n<meta property=\"og:description\" content=\"PTC\u2019s U.S. Patient Engagement team has worked hard to support patients and their families in the Spanish-speaking #raredisease community.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/panel.ptcbio.com\/es\/2023\/11\/01\/supporting-the-spanish-speaking-community\/\" \/>\n<meta property=\"og:site_name\" content=\"PTC Therapeutics (Spain)\" \/>\n<meta property=\"article:published_time\" content=\"2023-11-01T11:00:00+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/panel.ptcbio.com\/es\/wp-content\/uploads\/sites\/20\/2023\/10\/IM-spanish-language-resources-newsroom.png\" \/>\n\t<meta property=\"og:image:width\" content=\"466\" \/>\n\t<meta property=\"og:image:height\" content=\"262\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"3 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2023\\\/11\\\/01\\\/supporting-the-spanish-speaking-community\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2023\\\/11\\\/01\\\/supporting-the-spanish-speaking-community\\\/\"},\"author\":{\"name\":\"\",\"@id\":\"\"},\"headline\":\"Supporting the Spanish-Speaking Community\",\"datePublished\":\"2023-11-01T11:00:00+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2023\\\/11\\\/01\\\/supporting-the-spanish-speaking-community\\\/\"},\"wordCount\":478,\"publisher\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2023\\\/11\\\/01\\\/supporting-the-spanish-speaking-community\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/wp-content\\\/uploads\\\/sites\\\/20\\\/2023\\\/10\\\/IM-spanish-language-resources-newsroom.png\",\"articleSection\":[\"Rare Disease Community\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2023\\\/11\\\/01\\\/supporting-the-spanish-speaking-community\\\/\",\"url\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2023\\\/11\\\/01\\\/supporting-the-spanish-speaking-community\\\/\",\"name\":\"Supporting the Spanish-Speaking Community - 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