For many rare disease patients and their families, the journey begins with a struggle to obtain an accurate diagnosis and continues with an incomplete understanding of how the disease will progress. Managing the uncertainty that comes along with a missing or minimal diagnosis or with an unclear prognosis is a major challenge. This session will discuss strategies for managing forward through the unknown while making an important impact.
Speaker: Kimberly Bower, MD, Chief of the Division of Palliative Medicine, Rady’s Children’s Hospital, and Medical Director of the Pediatric Program, Scripps Hospice
Speaker: Caroline Loewy, MBA, Co-Founder and Board Member, KCNQ2 Cure Alliance
Speaker: Hillary Savoie, PhD, Founder and Co-Executive Director, The Cute Syndrome Foundation, and Writer
Day 1, Track 1