All videos

5 ultra-rare diseases you might not know about

This video is part of: Centre for Health and Healthcare

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.

Have you read?
Topics:
Health and Healthcare Systems
Share:
World Economic Forum logo

Forum Stories newsletter

Bringing you weekly curated insights and analysis on the global issues that matter.

Subscribe today

More on Health and Healthcare Systems
See all

No hallucinations, auditable workings, real-world outcomes: the power of neurosymbolic AI

Jeffrey Schumacher

December 31, 2025

Quantum vs AI in healthcare: How they differ and why leaders must prepare for convergence

2:11

About us

Engage with us

Quick links

Language editions

Privacy Policy & Terms of Service

Sitemap

© 2026 World Economic Forum