Opening Keynote: Resilient & Rare

In this opening session, Connie will share her story of being diagnosed with two rare disorders – factor seven deficiency and pemphigus vulgaris – after living with symptoms for her entire life. Connie was raised in a home and culture in which one did not discuss sickness or challenges or show weakness, and these diagnoses were overwhelming. She will talk about accepting and adjusting to her “new normal” and embracing the realities of living rare, living stronger. She will inspire us with her efforts to improve lives and empower the rare community, compelling us all to join in the rare fight.