Debra Bellon
Strategic Engagement Manager, Rare Diseases International
A World Health Assembly (WHA) Resolution on rare diseases is crucial to make rare diseases a global health priority and improve the lives of the 300 million persons living with a rare disease worldwide.
Today, thanks to the mobilisation of this community of patients, families, researchers and clinicians, science is advancing, healthcare is improving; and policies are emerging in more countries, leading to improved outcomes for persons living with a rare disease (PLWRD).
Global action needed for rare diseases
However, this progress has not been consistent across all communities. PLWRD across the globe continue to face delays in diagnosis, limited access to treatment and high costs. To improve the rare disease ecosystem, collective action through a collaborative and multisectoral approach is crucial. To truly achieve ‘health for all,’ rare diseases must be a global health priority.
That is why Egypt, Qatar, Spain, Malaysia and France are co-sponsoring a resolution entitled ‘Rare Diseases: A Priority for Global Health Equity and Inclusion’ at the World Health Assembly (WHA) 78 in May 2025 and calling on other Member States to cosponsor the initiative.
To truly achieve ‘health for all,’ rare
diseases must be a global health priority.
What will the Resolution address?
A WHA Resolution will provide Member States with a tangible framework for action and a clear and detailed roadmap. It will establish global targets and strategic goals, along with specific actions to achieve them. The guiding principles of this plan will include a common reference point for identifying rare diseases and a commitment to people-centred primary healthcare and universal health coverage. It will advocate for an integrated approach to care throughout an individual’s life and ensure that policies and practices are informed by the best available evidence.
To ensure effectiveness, a robust process for accountability and monitoring will be established, allowing for the tracking of implementation progress. Additionally, a dedicated budget for the WHO will be allocated to support member states in executing the plan, ensuring that resources are available to facilitate these critical actions.
An opportunity for leadership
This WHA Resolution is an opportunity for Member States to strengthen their positions as leaders in healthcare innovation, cement their commitment to health equity and inclusion and contribute their respective expertise and resources to improve the lives of PLWRD not only nationally, but globally.
It will be the catalyst that urges Member States to work together towards enhancing policy processes, advancing research, accelerating innovation and improving access to care for PLWRD worldwide.
To learn more, visit rarediseasesinternational.org/wha-resolution/
