WPA Welcomes Landmark WHO Resolution on Rare Diseases, Calls for Urgent Action to Turn Words into Action
The WPA celebrates the historic adoption of the first-ever World Health Assembly resolution on rare diseases, marking a pivotal milestone in the fight for equity, inclusion, and access to care for the world’s 300 million people living with one of over 7000 rare diseases.
The resolution, adopted at the Seventy-eighth World Health Assembly 2025, formally recognizes rare diseases as a global health priority and calls on Member States to take decisive action to ensure that no patient is left behind.
A Win for Patients — But the Hard Work Starts Now
“This resolution is a powerful acknowledgment that the challenges faced by people living with rare diseases are real, urgent, and deserve global attention,” said Andrew Spiegel, Chair of WPA. “However, resolutions alone are not enough. We now need concrete action, resources, and accountability to translate these commitments into better lives for patients and families worldwide.”
Key Provisions: A Blueprint for Change
The resolution urges governments to:
Integrate rare diseases into national health planning
Improve diagnosis, care, and treatment under the umbrella of universal health coverage (UHC)
Foster inclusive policies that leave no patient behind
Accelerate innovation and research
Ensure affordable access to effective treatments and interventions
Importantly, the resolution mandates WHO to develop a 10-year global action plan on rare diseases, with measurable targets that aim to address the profound inequities that rare disease patients often face.
Equity and Inclusion at the Heart
WPA strongly supports the resolution’s emphasis on equity and inclusion, recognizing that many rare diseases begin in childhood and can cause lifelong challenges physically, emotionally, and financially. Families often experience diagnostic odysseys, lack of access to specialists, and crushing out-of-pocket costs.
“Too often, rare disease patients suffer in silence, overlooked by health systems that were not designed to meet their needs,” noted Andrew Spiegel. “This resolution is a step towards changing that narrative towards building health systems that are inclusive, patient-centered, and resilient.”
From Resolution to Results: The WPA’s Call to Action
WPA calls on all stakeholders governments, WHO, health systems, researchers, industry, and patient organizations to:
Act quickly to develop the WHO global action plan, ensuring meaningful patient involvement in every step
Invest in diagnostic capacity and workforce training to shorten time to diagnosis
Remove financial barriers and promote sustainable reimbursement models to ensure access to affordable treatment
Support cross-border collaboration and knowledge-sharing to accelerate research and innovation
The WPA Commitment
WPA pledges to work collaboratively with WHO, Member States, and the global rare disease community to ensure that the voices of patients and families are heard, respected, and reflected in policy and practice.
This resolution is a beacon of hope. Let’s work together to make it a catalyst for real, lasting change.
