{"id":22,"date":"2025-10-09T20:43:38","date_gmt":"2025-10-09T20:43:38","guid":{"rendered":"https:\/\/lgmdcab.org\/?page_id=22"},"modified":"2025-10-14T10:29:27","modified_gmt":"2025-10-14T10:29:27","slug":"how-we-work","status":"publish","type":"page","link":"https:\/\/lgmdcab.org\/index.php\/how-we-work\/","title":{"rendered":"How we work"},"content":{"rendered":"<div id=\"tdi_1\" class=\"tdc-zone\"><div class=\"tdc_zone tdi_2  wpb_row td-pb-row\"  >\n<style scoped>\n\/* custom css - generated by TagDiv Composer *\/\n\n\/* custom css - generated by TagDiv Composer *\/\n.tdi_2{\r\n                    min-height: 0;\r\n                }\n<\/style><div id=\"tdi_3\" class=\"tdc-row\"><div class=\"vc_row tdi_4  wpb_row td-pb-row\" >\n<style scoped>\n\/* custom css - generated by TagDiv Composer *\/\n\n\/* custom css - generated by TagDiv Composer *\/\n.tdi_4,\r\n                .tdi_4 .tdc-columns{\r\n                    min-height: 0;\r\n                }.tdi_4,\r\n\t\t\t\t.tdi_4 .tdc-columns{\r\n\t\t\t\t    display: block;\r\n\t\t\t\t}.tdi_4 .tdc-columns{\r\n\t\t\t\t    width: 100%;\r\n\t\t\t\t}.tdi_4:before,\r\n\t\t\t\t.tdi_4:after{\r\n\t\t\t\t    display: table;\r\n\t\t\t\t}\n<\/style><div class=\"vc_column tdi_6  wpb_column vc_column_container tdc-column td-pb-span9\">\n<style scoped>\n\/* custom css - generated by TagDiv Composer *\/\n\n\/* custom css - generated by TagDiv Composer *\/\n.tdi_6{\r\n                    vertical-align: baseline;\r\n                }.tdi_6 > .wpb_wrapper,\r\n\t\t\t\t.tdi_6 > .wpb_wrapper > .tdc-elements{\r\n\t\t\t\t    display: block;\r\n\t\t\t\t}.tdi_6 > .wpb_wrapper > .tdc-elements{\r\n\t\t\t\t    width: 100%;\r\n\t\t\t\t}.tdi_6 > .wpb_wrapper > .vc_row_inner{\r\n\t\t\t\t    width: auto;\r\n\t\t\t\t}.tdi_6 > .wpb_wrapper{\r\n\t\t\t\t    width: auto;\r\n\t\t\t\t    height: auto;\r\n\t\t\t\t}\n<\/style><div class=\"wpb_wrapper\" ><div class=\"td_block_wrap td_block_text_with_title tdi_7 tagdiv-type td-pb-border-top td_block_template_2\"  data-td-block-uid=\"tdi_7\" >\n<style>\n\/* custom css - generated by TagDiv Composer *\/\n.td_block_text_with_title{\r\n                  margin-bottom: 44px;\r\n                  -webkit-transform: translateZ(0);\r\n                  transform: translateZ(0);\r\n                }.td_block_text_with_title p:last-child{\r\n                  margin-bottom: 0;\r\n                }.tdi_7{\r\n\t\t\t        color: #53575a;\r\n\t\t        }\n<\/style><div class=\"td-block-title-wrap\"><\/div><div class=\"td_mod_wrap td-fix-index\"><p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-73\" src=\"https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-scaled.jpg\" alt=\"\" width=\"2560\" height=\"1539\" srcset=\"https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-scaled.jpg 2560w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-300x180.jpg 300w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-1024x615.jpg 1024w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-768x462.jpg 768w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-1536x923.jpg 1536w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-2048x1231.jpg 2048w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-699x420.jpg 699w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-150x90.jpg 150w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-696x418.jpg 696w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-1068x642.jpg 1068w, https:\/\/lgmdcab.org\/wp-content\/uploads\/2025\/10\/DXanthopoulos_CAB_LGMD2_023-1-1920x1154.jpg 1920w\" sizes=\"auto, (max-width: 2560px) 100vw, 2560px\" \/><\/p>\n<p><span style=\"font-size: 18px;\"><strong>A Trusted Bridge Between Industry and the LGMD Community<\/strong><br \/>The LGMD CAB serves as a strategic partner for organisations developing therapies and conducting research in Limb Girdle Muscular Dystrophy. We provide structured, experience-based feedback that helps align scientific goals with the real-world needs of patients and families living with LGMD.<\/span><\/p>\n<p><span style=\"font-size: 18px;\"><strong>Our Approach<\/strong><br \/>Every collaboration begins with listening. Through confidential discussions and structured consultations, we identify how research or development plans can better reflect patient priorities and practical realities.Our members bring both personal experience and professional backgrounds in advocacy, clinical research, and policy \u2014 creating a well-rounded advisory perspective.<\/span><br \/><span style=\"font-size: 18px;\"><br \/><strong>We work according to principles of:<\/strong><br \/><\/span><span style=\"font-size: 18px;\">\u2022 Transparency \u2013 open dialogue with clear objectives and outcomes.<br \/><\/span><span style=\"font-size: 18px;\">\u2022 Independence \u2013 unbiased advice that serves both community and scientific integrity.<br \/><\/span><span style=\"font-size: 18px;\">\u2022 Confidentiality \u2013 protecting sensitive information while maintaining trust.<br \/><\/span><span style=\"font-size: 18px;\">\u2022 Respect \u2013 valuing each stakeholder\u2019s expertise and role.<\/span><\/p>\n<p><span style=\"font-size: 18px;\"><strong>What Collaboration Looks Like<\/strong><br \/>Engagement with the LGMD CAB is flexible and tailored to each partner\u2019s needs.<\/span><br \/><span style=\"font-size: 18px;\">Common formats include:<br \/><\/span><span style=\"font-size: 18px;\">\u2022 Advisory Meetings \u2013 one-time or recurring discussions on trial design, inclusion criteria, or protocol feasibility.<br \/><\/span><span style=\"font-size: 18px;\">\u2022 Workshops \u2013 deeper exploration of patient experience, trial logistics, or communication materials.<br \/><\/span><span style=\"font-size: 18px;\">\u2022 Document Reviews \u2013 written feedback on study protocols, informed consent forms, or patient materials.<br \/><\/span><span style=\"font-size: 18px;\">\u2022 Long-Term Partnerships \u2013 ongoing collaboration throughout a research or development program.<\/span><\/p>\n<p><strong><span style=\"font-size: 18px;\">The Process<br \/><\/span><\/strong><span style=\"font-size: 18px;\">1. Initial Contact \u2013 The partner outlines their project goals and objectives.<br \/><\/span><span style=\"font-size: 18px;\">2. Scoping &#038; Planning \u2013 We agree on topics, format, and confidentiality terms.<br \/><\/span><span style=\"font-size: 18px;\">3. Consultation \u2013 The CAB meets, reviews, and provides collective feedback.<br \/><\/span><span style=\"font-size: 18px;\">4. Summary Report \u2013 Partners receive structured, actionable insights.<br \/><\/span><span style=\"font-size: 18px;\">5. Follow-Up \u2013 Continued dialogue or review as projects evolve.<\/p>\n<p><strong>The Value We Bring<\/strong><br \/>\u2022 Improve trial design and participant retention.<br \/>\u2022 Anticipate practical challenges in implementation.<br \/>\u2022 Demonstrate authentic patient engagement to regulators and ethics boards.<br \/><\/span><\/p>\n<\/div><\/div><\/div><\/div><div class=\"vc_column tdi_9  wpb_column vc_column_container tdc-column td-pb-span3\">\n<style scoped>\n\/* custom css - generated by TagDiv Composer *\/\n\n\/* custom css - generated by TagDiv Composer *\/\n.tdi_9{\r\n                    vertical-align: baseline;\r\n                }.tdi_9 > .wpb_wrapper,\r\n\t\t\t\t.tdi_9 > .wpb_wrapper > .tdc-elements{\r\n\t\t\t\t    display: block;\r\n\t\t\t\t}.tdi_9 > .wpb_wrapper > .tdc-elements{\r\n\t\t\t\t    width: 100%;\r\n\t\t\t\t}.tdi_9 > .wpb_wrapper > .vc_row_inner{\r\n\t\t\t\t    width: auto;\r\n\t\t\t\t}.tdi_9 > .wpb_wrapper{\r\n\t\t\t\t    width: auto;\r\n\t\t\t\t    height: auto;\r\n\t\t\t\t}\n<\/style><div class=\"wpb_wrapper\" ><div class=\"td_block_wrap td_block_text_with_title tdi_10 tagdiv-type td-pb-border-top td_block_template_2\"  data-td-block-uid=\"tdi_10\" >\n<style>\n\/* custom css - generated by TagDiv Composer *\/\n.tdi_10,\r\n                .tdi_10 p{\r\n\t\t\t        font-family:EB Garamond !important;font-weight:300 !important;\r\n\t\t        }.tdi_10 h1{\r\n\t\t\t        font-family:EB Garamond !important;font-weight:300 !important;\r\n\t\t        }.tdi_10 h2{\r\n\t\t\t        font-family:EB Garamond !important;font-size:35px !important;line-height:42px !important;font-style:italic !important;font-weight:100 !important;\r\n\t\t        }.tdi_10 h3{\r\n\t\t\t        font-family:EB Garamond !important;font-weight:300 !important;\r\n\t\t        }.tdi_10{\r\n\t\t\t        color: #b0b3b2;\r\n\t\t        }.tdi_10 h1,\r\n\t\t\t\t.tdi_10 h2,\r\n\t\t\t\t.tdi_10 h3,\r\n\t\t\t\t.tdi_10 h4,\r\n\t\t\t\t.tdi_10 h5,\r\n\t\t\t\t.tdi_10 h6{\r\n\t\t\t        color: #b0b3b2;\r\n\t\t        }\n<\/style><div class=\"td-block-title-wrap\"><\/div><div class=\"td_mod_wrap td-fix-index\"><h2 style=\"text-align: center;\"><span style=\"font-size: 35px; font-family: 'EB Garamond';\">\u2018Our goal is simple: to make every study more human, feasible, and impactful\u2019.<\/span><\/h2>\n<h2 style=\"text-align: center;\"><span style=\"font-size: 35px; font-family: 'EB Garamond';\">\u2022 \u2022 \u2022\u00a0<\/span><\/h2>\n<h2 style=\"text-align: center;\"><span style=\"font-size: 35px; font-family: 'EB Garamond';\">\u2018Building trust and real \u00a0transparency with the LGMD community\u2019.<\/span><span style=\"font-size: 35px; font-family: 'EB Garamond';\">\u00a0<\/span><\/h2>\n<\/div><\/div><\/div><\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-22","page","type-page","status-publish"],"_links":{"self":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/pages\/22","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/comments?post=22"}],"version-history":[{"count":25,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/pages\/22\/revisions"}],"predecessor-version":[{"id":164,"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/pages\/22\/revisions\/164"}],"wp:attachment":[{"href":"https:\/\/lgmdcab.org\/index.php\/wp-json\/wp\/v2\/media?parent=22"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}