A continuation of the policy-related activities of RD-ACTION, the European Joint Action for RD, Rare2030 is a new strategic foresight study to reflect on the long-term future of people living with a rare disease in Europe and to provide policy recommendations through 2030 and beyond. This project is a 2 year initiative, and as the name suggests, will be focused on analysing the status quo for rare disease activities in Europe at present, looking very widely across any and all topics impacting on patients and professionals affected by these conditions. The understanding of this situation will then be used to identify trends, drivers of change, and determinants of health and wellbeing for Europe’s RD population looking ahead to 2030 (and probably beyond). The ultimate purpose of this is to allow the creation of new Recommendations (perhaps in the mould of those stimulating the creation of the ERNs, for instance) aimed towards European and national-level policy-makers.
Foresight is a tool that identifies the emerging issues that will trigger needs for policies and provides us with different future scenarios. It sets out road maps for how these future scenarios can be reached through changes in policies and strategies so as to better shape our tomorrow. In Rare2030, policies aimed at lessening the impact of rare diseases will be identified through a review of literature and European and national level initiatives in rare diseases – for example, national plans for rare diseases, patient data collection, research networks, health care organisation, access to treatments, empowerment of patients, social support and health care budgets. This knowledge base will allow a Panel of Experts, put together to support this initiative until 2020, to consider what new trends (both specific and not specific to rare diseases) will drive change.
The ERNs are key stakeholders in the European RD field and therefore have an important role in ensuring that policies and recommendations elaborated will reflect their needs and priorities. The Coordinator Thomas Wagner and ePAG representative Gergely Meszaros of ERN-LUNG have been nominated to the this Panel of Experts.