Rare disease affects the emotional health of the entire family, not just the patient. Family members may feel frustrated when they cannot relieve the physical and emotional stress of a loved one with the rare disease. Family members may also experience tremendous depression and anxiety due to grief over loss of what they thought their family life would be and relationship stress, including guilt and resentment due to the overwhelming burden of managing chronic disease in the home. Hear from leaders in counseling and rare disease advocacy about strategies and tools to find connections and celebrate a flourishing family life.
Speaker: Gay Grossman, Co-Founder, ADCY5.org, and Director of Patient Engagement, Neurogene
Speaker: Mousumi Bose, PhD, Scientific Advisory Board Committee Chair, Global Foundation for Peroxisomal Disorders, and Assistant Professor, Montclair State University
Speaker: Daniela Paolone, LMFT, Licensed Marriage Family Therapist, Westlake Village Conseling
Day 1, Track 1