On 25 – 26 October the Expert Conference “Towards a New European Policy Framework: Building the future together for rare diseases” took place in Prague. This was an official event of the Czech EU Presidency, bridging a series of technical and ministerial gatherings on proposals for a renewed strategy for rare diseases following the Slovenian and French presidencies.

Crucially, a Call to Action on rare diseases, alongside a specific call to the European Commission for a European Action Plan on rare diseases, was presented by Jakub Dvořáček, Deputy Health Minister of the Czech Republic.

This report has been prepared by EURORDIS-Rare Diseases Europe to shine a light on what was said at the Expert Conference on Rare Diseases.

(It is not an official report of the conference.)