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 fundamentals of antisense oligonucleotide (ASO) therapies and the critical role of informed consent in rare disease care.

The session features an overview from Dr. Olivia Kim-McManus, who explains what ASOs are, how they work, where they fit within today’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.

Whether you’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.

Resources Included:

• Webinar recording
• Presentation slides
• Additional resources related to ASOs and informed consent
  • Clinical Trails – Child Neurology Foundation
  • Pathway to Treatment – n-lorem Foundation
  • The Emerging Era of N-of-1 Drugs for Ultra-Rare Genetic Diseases
  • Preparing for Patient-Customized N-of-1 Antisense Oligonucleotide Therapy to Treat Rare Diseases