Geneva, Switzerland | 24 May 2025 – In a historic move, the 78th World Health Assembly has adopted the first-ever resolution declaring rare diseases a global health priority, signaling a major step forward in advancing health equity and inclusion for millions worldwide.

The landmark resolution, supported by WHO Member States, recognizes that over 300 million people globally live with one of more than 7,000 rare diseases, many of which begin in childhood and can cause lifelong physical, emotional, and financial challenges.

What Are Rare Diseases?

Rare diseases are defined as health conditions that affect fewer than 1 in 2,000 people. While individually uncommon, collectively they impact millions, with up to 70% beginning in childhood. Many are genetic, chronic, and disabling, often leading to late diagnoses, stigma, and limited treatment options.

Why This Matters

Patients with rare diseases often fall through the cracks of health systems not designed for their needs. Long diagnosis delays, high treatment costs, and limited policy attention make daily life difficult, especially in under-resourced areas.

This resolution places rare diseases on the global health agenda alongside malaria, NTDs, HIV, and maternal and child health. It also opens doors for inclusion in Kenya’s UHC roadmap and national strategic plans.

What is next?

Health Pulse will continue to follow the developments around this global action plan and its implications for Kenya’s health systems. As advocates and storytellers, we believe that no one should be invisible to the system meant to protect them.

Stay with us this week as we share rare disease facts, voices from Kenya, and pathways for action.