DESCRIPTION

The overarching goal of this WP is to disseminate rare diseases-related information and improve the two-way information flow between the national and European levels. WP2 aims to ensure the appropriation of the EU-level policy environment and Joint Action activities at national level, to facilitate the integration of EU relevant policy and regulatory developments within the national systems, while letting national initiatives in the field of rare diseases emerge and being shared with EU policymakers and amongst stakeholders.

GOALS

1. To set up and maintain the Joint Action dissemination tools.
2. To produce a twice-monthly newsletter of the rare disease community, Orphanews.
3. To hold the European Conference on Rare Diseases and Orphan Medicinal Products in May 2016, in Edinburgh.
4. To support national workshops aimed at disseminating at national level the JA activities and the Recommendations produced and adopted by the EUCERD/Commission Expert Group on Rare Diseases (CEGRD).
5. To support national authorities in the consolidation of sustainable and resilient health systems.