Rare2030: Experts meet to imagine the future of rare diseases
On 7th October a multi-stakeholder group of over 100 experts from the rare disease field met in Brussels in the scope of the 2-year Rare 2030 project. This EU Pilot Project, commissioned by the European Parliament and coordinated by EURORDIS started in January 2019, and is aimed at guiding a reflection on rare disease policy in Europe through the next ten years and beyond. Experts were joined by members of European Parliament and the European Commission; including Mrs Fredérique Ries (MEP), who have championed this reflection since its inception. The panel has spent the first three quarters of 2019 consolidating their views into twelve proposed trends that are influencing rare disease policy, informed by an extensive literature review performed at the start of the project. The draft trends were presented by the project partners and were validated by the experts during the meeting. In the afternoon, the experts had the opportunity to discuss the interactions between the different trends in small groups, in order to imagine how they could converge in a number of possible futures, depending on whether or not they may continue to develop in their current direction, and with what force. Following on from this conference the finalised list of trends will be published.
The conference was the opportunity to further develop the knowledge of the experts concerning foresight methodologies and to prepare them for the next steps in the process, namely to look forward twenty years and choose preferred futures informed by the defined trends. The panel of experts will also identify which policies will be needed to lead the community to the preferred future scenario by 2030, in particular by preparing recommendations to the European Parliament in order to best guide future rare disease policies at the European level, in the Member States and beyond. The European Conference on Rare Diseases and Orphan Drugs to be held in Stockholm on 15-16 May 2020 will serve as the next check-in point in the project, serving as an opportunity to integrate the foresight thinking into discussions and thus open the debate on the policy options needed to get to the community’s preferred scenrarii. The event will serve to evaluate the plausibility and consistency of proposed scernarii and to fine-tune the description of these futures to different territorial contexts.