On 24 May 2025, during the 78th World Health Assembly (WHA), all WHO Member States unanimously adopted the first-ever Resolution on Rare Diseases, officially declaring rare diseases—including bleeding disorders—as a global health priority.
Key Highlights:
- Global visibility and recognition: Acknowledges that over 300 million people worldwide live with rare diseases, many of which begin in childhood and impose significant physical, emotional, and financial burdens.
- National policy integration: Urges countries to embed rare disease strategies into national health plans, enhancing early diagnosis, screening, and equitable care under Universal Health Coverage.
- Access to care & treatments: Emphasizes improved access to affordable medicines, assistive technologies, and coordinated, patient-centred services.
- Research, innovation & data: Calls for boosted research investment, development of digital tools, patient registries, and the creation of a ten-year Global Action Plan—to be drafted by 2028—and presented at WHA81.
- Patient involvement: Highlights the essential role of patient organisations in developing policies, designing health services, and steering research efforts.