A landmark resolution on rare disease
Last week a landmark resolution on rare disease was adopted at the 78th World Health Assembly. This marks a significant step toward global health equity and inclusion.
The Resolution was originally proposed by Spain and the Arab Republic of Egypt. 24 other countries co-sponsored the resolution and 275 organisations formed a coalition to promote it. This included Medics for Rare Disease.
What is the World Health Assembly
The World Health Assembly (WHA) is the decision-making body of the World Health Organization (WHO). It plays a central role in global health governance. Delegates from all 194 WHO Member States, including health ministers and public health officials. It meets annually with the purpose to set policies, approve budgets, and make key decisions about global health priorities.
What Does this Mean?
The resolution calls for the development of a comprehensive Global Action Plan on Rare Disease (GAPRD). Many European countries currently have a national ‘Action Plan’ of some sort however they are variable and there is limited global alignment, despite rare disease causing similar challenges all over the world. A Global plan would provide countries with a tangible framework for action including global targets, strategic goals, and specific actions to achieve them. It could also enable aligning financial resources, policies, and efforts to ensure more efficient and equitable outcomes.
Success of a Global Action Plan will require continued collaboration among governments, international organisations, and the rare disease community to ensure its success. Given the global and collaborative spirit that led the adoption of Resolution 4 Rare, we believe the Rare Community has what it takes.
With thanks to Rare Disease International, all the co-sponsor countries and the coalition organisations for making this happen.
What now?
Medics for Rare Disease continues its work with Rare Disease International via the Lancet’s Global Commission on Rare Disease. The hope is that this work would be a starting framework for the Global Rare Disease Action Plan. So keep following our work to find out what happens next! Read the full announcement here
