Purpose
To share a successful example of building a rare disease social network by creating a scalable, connected
community and making patient education readily accessible.
Background
MyHealthTeam (MHT) has created 61 social networks for people living with chronic health conditions, including 14 rare diseases. The social networks provide individuals living with these conditions an opportunity to meet others in their position, feel less alone and isolated, and access medically reviewed, easily-understood content. Primary Biliary Cholangitis (PBC) is an autoimmune disease that causes progressive destruction of bile ducts. It affects roughly 65 out of 100,000 women in the United States. This case study shares examples of some of the different tactics MHT has employed with myPBCteam.