The workshop was chaired by Dr Sigurbjörg Sigurgeirsdóttir (Associate Professor of Public Policy and Governance, University of Iceland) and the discussion was addressed by experts on rare diseases from each of the country partners, namely Estonia, Iceland, Malta, and Slovenia.
Prof. Neville Calleja, who is also Director of Health Information and Research within the Maltese Ministry for Health, explained how a rare diseases register was established in Malta and he highlighted the opportunities that small states offer in the study and management of rare diseases. Experts from Slovenia, Estonia, and Iceland presented experiences from their respective countries.
The workshop dealt with the many challenges faced by small EU States with regard to the difficulty to treat rare diseases, including high costs of treatments, as well as the lack of financial and human capacity. It was concluded that cooperation between other countries and the EU plays a key role in this context, by providing networking, funding, and cross-country collaboration opportunities.
The workshop presentations will be available on the project website.