COST Action CA18218

Rare Diseases Task Force

The European Burden of Disease Network launched the Burden of Rare Diseases Task Force (TF), as a sub-group of WG1 NCDs and Injuries. The TF aims to bring together members who are assessing or interested in assessing the burden of rare diseases at population level, with the ultimate goal to make rare diseases more visible for policy makers, researchers, and the general public.

Its aims are to:

  • share experiences in burden of rare disease calculation studies
  • map burden of disease indicators employed in calculating the burden of rare diseases
  • map methodological advances in burden of rare disease studies assessing Disability-Adjusted Life Years
  • support each other with burden of rare disease calculations.

The TF meets approximately every six weeks. We welcome members as well as those with expertise in rare diseases to join the European Burden of Disease TF on Rare Disease.

If you are interested in joining the Burden of Rare Diseases TF, please send your application and CV at:

About COST

COST (European Cooperation in Science and Technology) is a funding agency for research and innovation networks. COST Actions help connect research initiatives across Europe and enable scientists to grow their ideas by sharing them with their peers. This boosts their research, career and innovation. Read more via

Get in touch

COST logo

Funded by the European Union

Website by  woluweb mini