We are thrilled to share the news of that the World Health Assembly, the voting arm of the World Health Organization, has passed the Resolution on Rare Diseases. The following is the press release from our collaborative partner, Rare Diseases International:
May 24, 2025 - On 24 May, Member States of the 78th World Health Assembly (WHA) adopted the first-ever Resolution on Rare Diseases: a remarkable milestone in the global effort to improve the lives of the over 300 million people living with a rare or undiagnosed disease. The Resolution calls on the World Health Organization Director General to develop a Global Action Plan on Rare Diseases, which represents a 10-year roadmap to strengthen health systems around the world.
Persons Living with a Rare Disease (PLWRD) face significant challenges. It takes 4-6 years on average for a rare condition to be diagnosed, even in wealthy countries. Millions of people never receive a diagnosis, even after extensive genetic testing. 95% of rare conditions have no approved treatment. The financial burden faced by persons living with rare diseases and their families as the result of high out-of-pocket medical expenses, rehabilitation and equipment costs, and lost wages is substantial, and can be catastrophic. Nearly 60% of PLWRD report facing discrimination as the result of their condition.
The adoption of the WHA Resolution is a landmark achievement demonstrating to the world that rare diseases are a global health priority and that the unique challenges and inequities faced by people living with a rare or undiagnosed disease deserve to be recognized and addressed.
Read the full draft decision
Rare Diseases: a global health priority for equity and inclusion
The WHA Resolution on Rare Diseases has the potential to elevate the visibility of both rare and undiagnosed diseases on the global health agenda, creating pathways for earlier and more accurate diagnoses and expanded treatment, care and support. In part, the Resolution calls upon Member States to:
- Commit to actions that enhance support for rare diseases, including policy development, integration into health plans, and awareness campaigns
- Mobilize resources and explore innovative funding models, particularly for developing countries
- Encourage the creation of National and Regional Centers of Excellence for research, training, and care in rare diseases
- Encourage the establishment of national rare disease registries to collect and analyze data
- Foster collaboration across policymakers, academia, the private sector, and civil society to drive research and innovation in diagnosis and treatment
Source: Briefing Notes: Towards A WHA Resolution On Rare Diseases
Persons Living With a Rare Disease (PLWRD) continue to face challenges including delays in diagnosis, limited access to treatments and care, and financial burdens.
The vast challenges of treating PLWRD cannot be resolved by a single country or entity. They can only be addressed by a global, multidisciplinary, and collaborative approach.
A World Health Assembly Resolution on Rare Diseases aims to address these challenges through a comprehensive global framework that includes raising awareness, improving diagnosis, enhancing access to care and treatment, and fostering research and development of therapies.
The steps to the WHA Resolution on Rare Diseases include:
- Secure Member State(s) to table the resolution (September 2024)
- Member State(s) draft the resolution for consideration for the WHO Executive Board Agenda
- WHO Executive Board accepts resolution (February 2025)
- Resolution ratified by all Member States at the World Health Assembly (May 2025)
Source: https://www.rarediseasesinternational.org/wha-resolution/