Meaningful Change Series Session 3 | Co-Creating a Relationship of Care

Hosted by Heather Bentley of Writing for Rare, and featuring Dr. Nicole Cobo (Neurologist), Marcy Hoang (SCN8A caregiver) and Xuan Hoang (SCN8A warrior). When her daughter Xuan turned 19, Marcy knew she couldn’t put off finding an adult neurologist much longer. She did her research and made an appointment with a local specialist who she’d met at an Epilepsy Foundation event. But when the day came for the appointment, the doctor didn’t seem to hear anything Marcy was saying. He recommended repeating tests to confirm things Marcy had already explained to him. She started the neurologist search again, and in February Xuan had her first visit with Dr. Nicole Cobo. In this Meaningful Change session, Marcy, Xuan, and Nicole will share their perspectives on what makes the provider – patient – caregiver relationship successful and what gets in the way. Families will hear how they are building a care relationship meant to last, as well as practical recommendations for better healthcare interactions, including pharmacy and insurance tips.