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SUMMARY:Understanding ASOs & Informed Consent
DESCRIPTION:Join DEEP and KCNT1 for an educational webinar exploring the fundamentals of ASO therapies and the critical role of informed consent in rare disease care. This session is designed for caregivers\, clinicians\, researchers\, and advocates seeking a clearer understanding of how ASOs work\, where they fit within today’s treatment landscape\, and how families can approach conversations about experimental and individualized therapies. \n\n\n\nIn addition to clinical expertise\, this webinar will feature lived experience perspectives from caregivers who have firsthand experience navigating ASO-related decisions. Parent panelists will share their personal journeys\, including how they learned about ASOs\, the questions they asked\, the challenges they faced\, and what they wish they had known along the way. \n\n\n\nKey Topics\n\n\n\n\nWhat are antisense oligonucleotide (ASO) therapies?\n\n\n\nHow do ASOs work\, and where do they fit in current treatment and research?\n\n\n\nUnderstanding the benefits\, risks\, limitations\, and unknowns of emerging therapies\n\n\n\nWhat informed consent means beyond signing a form\n\n\n\nQuestions families should consider asking when evaluating treatment options\n\n\n\nParent perspectives on navigating ASO-related decisions\n\n\n\nBalancing hope\, uncertainty\, and informed decision-making in rare disease care\n\n\n\n\nSpeakers\n\n\n\nOlivia Kim-McManus\, MDDr. Olivia Kim-McManus is a pediatric neurologist and epileptologist at Rady Children’s Hospital-San Diego and Assistant Professor of Neurosciences at the University of California San Diego. She specializes in rare genetic epilepsies and precision therapeutics\, with a particular focus on developing individualized treatments\, including antisense oligonucleotide (ASO) therapies\, for children with severe neurological disorders.
URL:https://deepconnections.net/ta_lk/event/understanding-asos-informed-consent/
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