Let's Think Zebras: Understanding Rare Disease Through the Lives of Those it Affects Breaking the Code

A rare disease diagnosis is the beginning of a journey of unknowns. From an HCPs ability to treat, to a caregivers' emotional burden, to a patient's sense of identity, there are a variety of factors that remain uncertain or unclear which makeup the unique challenge of having a rare disease. Despite the challenge, people living with rare disease persevere and form communities - real communities - they share advice and relatable experiences while staying emotionally invested in each...