{"id":8156,"date":"2026-07-02T09:52:06","date_gmt":"2026-07-02T13:52:06","guid":{"rendered":"https:\/\/deepconnections.net\/?p=8156"},"modified":"2026-07-02T09:52:12","modified_gmt":"2026-07-02T13:52:12","slug":"understanding-asos-informed-consent-2","status":"publish","type":"post","link":"https:\/\/deepconnections.net\/es_mx\/2026\/07\/02\/understanding-asos-informed-consent-2\/","title":{"rendered":"Understanding ASOs &amp; Informed Consent"},"content":{"rendered":"<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio has-custom-css\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"Understanding ASOs &amp; Informed Consent\" width=\"500\" height=\"281\" src=\"https:\/\/www.youtube.com\/embed\/5OlWrFqvWOw?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe>\n<\/div><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\">Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and <a href=\"https:\/\/www.kcnt1epilepsy.org\">KCNT1 Epilepsy<\/a> explore the fundamentals of antisense oligonucleotide (ASO) therapies and the critical role of informed consent in rare disease care.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The session features an overview from&nbsp;<strong>Dr. Olivia Kim-McManus<\/strong>, who explains what ASOs are, how they work, where they fit within today&#8217;s treatment landscape, and key considerations for families as they evaluate potential treatment opportunities. The webinar also includes a parent panel sharing firsthand experiences with learning about ASOs, weighing risks and benefits, asking difficult questions, and navigating complex medical decisions.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Whether you&#8217;re new to ASOs or looking to better understand the informed consent process, this webinar offers practical education and real-world perspectives to help caregivers feel more informed and empowered.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Resources Included:<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><a href=\"https:\/\/youtu.be\/5OlWrFqvWOw?si=b7y-3LgOSd9D1WTF\">Webinar recording<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/drive.google.com\/file\/d\/1nRWDkv9r3RpAtbCQ-LQcdEtte5kUI3wf\/view?usp=sharing\">Presentation slides<\/a><\/li>\n\n\n\n<li>Additional resources related to ASOs and informed consent\n<ul class=\"wp-block-list\">\n<li><a href=\"https:\/\/www.childneurologyfoundation.org\/clinical-trials\/\">Clinical Trails &#8211; Child Neurology Foundation<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/www.nlorem.org\/access-treatment\/\">Pathway to Treatment &#8211; n-lorem Foundation<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/oligotherapeutics.org\/the-emerging-era-of-n-of-1-drugs-for-ultra-rare-genetic-diseases\/?utm_source=chatgpt.com\">The Emerging Era of N-of-1 Drugs for Ultra-Rare Genetic Diseases<\/a><\/li>\n\n\n\n<li><a href=\"https:\/\/pmc.ncbi.nlm.nih.gov\/articles\/PMC11275492\/?utm_source=chatgpt.com\">Preparing for Patient-Customized N-of-1 Antisense Oligonucleotide Therapy to Treat Rare Diseases<\/a><\/li>\n<\/ul>\n<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>Navigating emerging treatment options can feel overwhelming, especially when families are asked to make decisions about experimental or individualized therapies. In this educational webinar, DEEP and KCNT1 Epilepsy explore the&hellip;<\/p>","protected":false},"author":9,"featured_media":8100,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_EventAllDay":false,"_EventTimezone":"","_EventStartDate":"","_EventEndDate":"","_EventStartDateUTC":"","_EventEndDateUTC":"","_EventShowMap":false,"_EventShowMapLink":false,"_EventURL":"","_EventCost":"","_EventCostDescription":"","_EventCurrencySymbol":"","_EventCurrencyCode":"","_EventCurrencyPosition":"","_EventDateTimeSeparator":"","_EventTimeRangeSeparator":"","_EventOrganizerID":[],"_EventVenueID":[],"_OrganizerEmail":"","_OrganizerPhone":"","_OrganizerWebsite":"","_VenueAddress":"","_VenueCity":"","_VenueCountry":"","_VenueProvince":"","_VenueState":"","_VenueZip":"","_VenuePhone":"","_VenueURL":"","_VenueStateProvince":"","_VenueLat":"","_VenueLng":"","_VenueShowMap":false,"_VenueShowMapLink":false,"footnotes":""},"categories":[1066,1021,1025],"tags":[],"class_list":["post-8156","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-clinical-trials","category-research","category-webinar"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.1 (Yoast SEO v28.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Understanding ASOs &amp; 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