The Importance of Patient Engagement in Rare Diseases

Chris: I recently finished the Amy Dockser Marcus's book We The Scientist in which she describes the engagement of patients and their families in studies of a genetic disease, neem and pick disease. She was struck by parallels with the discovery process in some of our rheumatologic diseases are very strong patient engagement and commitment to longitudinal observational studies. Chris: improving life expectancy takes a lot of patience and commitment but patient engagement generally moves the process forward thank you all in the sclerodama community for making that happen.