Mohammad Isham Jaafar and Gong Yingying
2025年8月6日
5 ultra-rare diseases you might not know about
This video is part of: 健康与医疗中心
Globally, an estimated 263-446 million people live with a rare disease, but the numbers are unclear due to a lack of data. Most of these diseases will never be diagnosed.
Globally, an estimated 263-446 million people live with a rare disease. However, due to a lack of data, the true number is likely much higher. Most of these diseases remain undiagnosed, leaving patients without proper treatment or support.
Challenges in rare disease management
Around 50-75% of rare diseases begin in childhood, and treatment is often difficult due to the lack of financial incentives for drug development for such a small patient pool. Tragically, one-third of children with a rare disease don't reach their 5th birthday.
Promoting health equity
The theme for this year’s Rare Disease Day campaign is health equity, aiming to draw attention to the challenges rare disease patients face in accessing screening and care. It also seeks to address the disparities in access to healthcare between different countries.
The World Economic Forum's Global Health Equity Network is a crucial initiative in this fight. It brings together leaders from various sectors to collaborate and advance health equity on a global scale.
