On September 16th 2019, a workshop “Rare disease perspectives in Central – Eastern Europe”, twinned to the General Assembly of EJP RD, will be organized in Gdansk, Poland. The main aims of this conference are discuss challenges and opportunities of rare disease research in Central – Eastern Europe countries and areas of involvement within EJP RD for multiple stakeholders (including researchers, clinicians, authorities, and patient organizations).
Presentations on rare disease policies, clinical research and innovation, data ecosystem, Orpha coding, biobanks, rare disease research education, European Reference Networks and other important topics will be given by the major EJP RD partners and representatives of local rare disease research communities.