In order to capitalize the experience and in line with the Communication from the European Commission, an important task of RD-ACTION is intended to support national authorities to quantify
the burden of RDs and identify available resources for sustainable and resilient health systems, taking into account the principles of equity, quality and efficiency, and involving stakeholders, policy makers and civil servants in charge of national strategies on RDs.
A literature review on Health System Resilience for RD, now published in a peer-reviewed journal (here), allowed to identify priority areas that were defined during the first workshop. Altogether, six
working groups were established  to conduct an analysis on these priority areas.
Their work was discussed in two additional workshops and led to the production of six Policy Briefs below:
1. Resilience
2. Actions on Educational Programmes and Training for Professionals
3. Primary Prevention as an essential factor ensuring sustainability of health systems: The example of congenital anomalies
4. Health Systems for Rare Diseases: Financial Sustainability
5. Integrated Care
6. Patient Empowerment