burden-eu: Assessing the social and economic burden of rare diseases

The European Burden of Disease Network (burden-eu) is an Action of European Cooperation in Science and Technology (COST), undertaken in cooperation with the WHO Regional Office for Europe and funded by the European Union. Its aim is to address disparities in research capacity and improve translation of findings related to the burden of diseases by providing a technical platform for capacity-building and knowledge sharing both within Europe and internationally.

While burden-eu has a broad overall mandate meant to capture global disease burden, they also have a specific task force dedicated to assessing the burden of rare diseases at a population level. The Rare Diseases Task Force works within the framework of burden-eu to define the existing unmet need related to the burden of rare diseases and its impact on population health, as measured by disability-adjusted life years (DALYs); with the ultimate goal of making rare diseases more visible for policy makers, researchers, and the general public.

The Task Force recently published an update on their work in Nature Medicine. In it, they reiterate the utility of DALYs for defining the social and economic burden of disease. The authors also discuss the barriers and gaps that exist in applying DALYs to rare diseases. DALY estimates have not been calculated for the vast majority of rare diseases, which makes it particularly difficult to quantify their actual impact on population health. The work of the Task Force is meant to help address this and other gaps, enabling future prioritisation of rare disease research and policy.

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