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 aย rareย disease in Europe and to provideย policy recommendationsย throughย 2030ย 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 toย identify trends, drivers of change, and determinants of health and wellbeingย for Europeโs RD population looking ahead to 2030 (and probably beyond).ย The ultimate purpose of this is to allow the creation of new Recommendationsย (perhaps in the mould of thoseย stimulating the creation of the ERNs, for instance) aimed towards European and national-level policy-makers.
Foresightย is a tool that identifies the emerging issues that will trigger needs for policies and provides us with different futureย scenarios. Itย 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.ย In Rare2030, policies aimed at lesseningย the impact of rare diseases will be identified through a review of literatureย and European and national level initiatives in rare diseases โ for example,ย 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. Thisย knowledge base will allow aย Panel of Experts, put together to support this initiative until 2020, to consider what newย trendsย (both specific and not specific to rare diseases) willย driveย 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 reflectย theirย needs and priorities. The Coordinator Thomas Wagner and ePAG representative Gergely Meszaros of ERN-LUNG have been nominated to theย this Panel of Experts.
