{"id":12977,"date":"2025-06-10T22:51:53","date_gmt":"2025-06-10T22:51:53","guid":{"rendered":"https:\/\/epitomestaging.com\/tnc\/?page_id=12977"},"modified":"2025-06-11T14:49:54","modified_gmt":"2025-06-11T14:49:54","slug":"med13l-syndrome","status":"publish","type":"page","link":"https:\/\/epitomestaging.com\/tnc\/med13l-syndrome\/","title":{"rendered":"MED13L Syndrome"},"content":{"rendered":"

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Patient Engagement<\/h1>\n

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Patient Engagement<\/h1>\n

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For Patients<\/h1>\n

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Partnerships for MED13L Syndrome<\/h2>\n

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The MED13L Foundation<\/h3>\n

The MED13L Foundation strives to spread awareness, provide family support, and advance medical research in search of a cure for MED13L syndrome.<\/p>\n

LEARN MORE ><\/a><\/p>\n

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RESEARCH STUDY<\/strong><\/p>\n

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ACTION for MED13L<\/h3>\n

PI: <\/b>Maya Chopra, MBBS, FRACP\u00a0 |\u00a0 Natural History Study<\/p>\n

The MED13L Syndrome cohort of the ACTION Initiative, led by geneticist, Dr. Maya Chopra and neurologist, Dr. Sara Trowbridge, has been established in collaboration with the MED13L Foundation. Data collection for the cohort leverages RSZ TNC resources shared across several Natural History Study cohorts, with neurobehavioral assessments and medical history collection designed specifically for MED13L Syndrome. Data collection will occur annually for three years and will include an interview with the study team, physical and neurological exams, neurobehavioral assessments and questionnaires, medical record collection, and optional collection of photographs and\/or blood samples. Participants may complete data collection in-person at Boston Children\u2019s Hospital or virtually, with the option to complete initial data collection at the MED13L Foundation\u2019s 2025 Research and Family Meetup in Waltham, MA.<\/p>\n

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For PatientsPartnerships for MED13L SyndromeThe MED13L Foundation The MED13L Foundation strives to spread awareness, provide family support, and advance medical research in search of a cure for MED13L syndrome. LEARN MORE >RESEARCH STUDYACTION for MED13L PI: Maya Chopra, MBBS, FRACP\u00a0 |\u00a0 Natural History Study The MED13L Syndrome cohort of the ACTION Initiative, led by geneticist, […]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"class_list":["post-12977","page","type-page","status-publish","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/12977","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/comments?post=12977"}],"version-history":[{"count":7,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/12977\/revisions"}],"predecessor-version":[{"id":12997,"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/pages\/12977\/revisions\/12997"}],"wp:attachment":[{"href":"https:\/\/epitomestaging.com\/tnc\/wp-json\/wp\/v2\/media?parent=12977"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}