Patients with rare diseases and their life choices

Some people, most of the time without any bad intention, argue that one should not give birth to a child if they themselves are a patient with a rare disease. But is that right?

Yi’ou Wang is the Secretary-General of the Illness Challenge Foundation and a rare disease patient herself. In this talk, she takes us further into this seemingly logical reasoning until we reach some surprising conclusions. She also reminds us that there is no such thing as certainty in our lives. 2014's Ice Bucket Challenge may have been the first time rare diseases gained mass attention in China. Wang succeeded in localizing and promoting the Ice Bucket Challenge in China through Weibo and China Dolls, an organization she initiated. Along with the Narada Foundation, China Dolls established the Illness Challenge Foundation. Together, they aim to create a platform that transforms media attention into an efficient system to combat the social injustices that patients may encounter. Their vision is to build a society based on justice, equality, and love—one where everyone is accepted and supported, regardless of their illness or any other difficulties. Wang herself suffers from osteogenesis imperfecta. Though she may appear small in stature, her belief is powerful enough to change the world.