Rare 2030 is a two-year foresight study, which uses a participatory approach to identify the most relevant drivers of change in the field, anticipate their influence over the next decade, through developing scenarios and propose policy recommendations that lead to a better future for people living with rare diseases (RD).

*Rare 2030 is co-funded by the European Union Pilot Projects and Preparatory Actions Programme (2014- 2020), as pilot project PP-1-2-2018-Rare 2030. 


The specific objectives of this project begin by establishing the baseline knowledge required to identify, agree on and rank the drivers for the future of European RD policy. Ranked drivers serve as the backbone for reaching the objective of proposing and reaching consensus on the most preferred scenarios describing future European RD policy. Preferred scenarios are used as guides for the final objective of creating policy recommendations that will lead to a future best matching these preferred scenarios.

The main steps of the project includes literature review, horizon scanning and stakeholder consultation on trends and drivers, creation of scenarios, scenarios survey, consensus conference, EU-level and regional workshops to draft policy recommendations and a final policy conference at the European Parliament containing recommendations on the most critical issues requiring policy attention in future.


  • Project Management, supporting EURORDIS (project coordinator) in the smooth and good implementation of the project in line with the workplan;
  • Lead of the foresight process: from horizon scanning for trends and drivers (disruptive events, wild cards, etc), to scenario development and backcasting process. To ensure participatory process, ISINNOVA runs series of interviews with RD experts (about 10) and contributes to other consultations activities, such as the series of teleconferences with the members of the Panel of Experts of RARE 2030. ISINNOVA contributes to the process of scanning and ranking of drivers and trends on high importance/ high uncertainties for the future of RD care and governance. Finally, ISINNOVA is a leading participant for scenario building, which aims to craft consistent and plausible storylines able to capture the complex interaction between multiple factors and drivers influencing RD governance and assess the costs and impacts of different policy options.




Andrea Ricci

Project website