TEDxGuangzhou (TEDxXiguan) 2014-2023

罕见病患者的人生抉择

王奕鸥

有些人——尽管多半并无恶意——认为罕见病患者不应选择生育。然而，这种看似合理的观点真的站得住脚吗？王奕鸥不仅是一名罕见病患者，同时也是病痛挑战基金会的秘书长。在这场演讲中，她带领我们一步步剖析这一观点，直至揭示出令人意想不到的结论。同时，她也提醒我们，人生本就充满未知，没有绝对的确定性。

2014 年的“冰桶挑战”或许是罕见病议题首次在中国引发广泛关注。王奕鸥通过微博及她创立的瓷娃娃中心，成功推动并本土化了这一公益活动。此后，她与南都基金会携手，成立了病痛挑战基金会，希望通过这一平台，将社会的关注转化为切实有效的行动，改善罕见病患者可能面临的社会不公。

他们的愿景是打造一个公平、包容、充满关爱的社会，让每个人无论身处何种困境，都能被尊重、接纳与支持。王奕鸥本人患有成骨不全症，虽身形瘦小，但她的信念却无比坚定，她用自己的力量，推动世界向更加包容、公正的方向前进。

Patients with rare diseases and their life choices

Yi’ou Wang

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.