Towards a New European Policy Framework: Building the future together for rare diseases
Following the Expert Conference on Rare Diseases held under the auspices of the Czech Presidency of the Council of the European Union on 25-26 October 2022 (see our previous Editorial), an updated website has been made available.
The conference marked a major milestone in the proposal for a policy framework for rare diseases following the conclusions of the European Court of Auditor’s report n°7/2019, the cross-sector consensus from over 250 stakeholders in the Rare 2030 Foresight Study, the 43 cosignatory members of the European Parliament in their letter of support for Europe’s Action Plan, the recognition of the “undeniable benefit” of stronger cooperation during the Informal meeting of Ministers of Health in Grenoble and the support of thousands of patients and key opinion leaders and policy makers presented at the High Level Ministerial Conference: Care and innovation pathways for an EU policy on rare diseases in support of the proposal for a European Action Plan on Rare Diseases held during the previous French Presidency.
The Call for Action for a renewed European Policy Framework for Rare Diseases will be presented as an outcome of the Czech Presidency on 9 December 2022 at the EPSCO Meeting of Ministers of Health in Brussels.
