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.