Rare 2030 - a participatory foresight study for policy-making rare diseases

Topic description

Scope:

Rare 2030 is a two-year project, led by a research team, but using inclusive methods to promote a focus on EU added value.
A continuous bottom-up approach will be used so as to put more emphasis on interaction and to encourage a broad take-up by patients, stakeholders and society at large of approaches developed at EU level.
The purpose of the pilot project is to propose sustainable policy scenarios in the field of rare diseases for the period 2020-2030 and to address challenges and opportunities up until 2030 in a comprehensive and innovative manner, with particular emphasis on limited competences at EU level.

The methodological steps and timeline for Rare 2030 will include different work packages:

• base research, including literature reviews and exploratory interviews to identify drivers of change and current and future challenges; - establishment of an expert / multi-stakeholder panel;
• consensus building methods will be used to define the main drivers (political, scientific, etc.) for scenario building and will be open to large groups of stakeholders on a European level;
• an interdisciplinary and forward-looking workshop for scenario building will be used as a tool to reveal available choices and their potential consequences; the scenarios developed will take into account resources at EU level, and include options to use the existing structures better, in particular the framework of the European Reference Networks (ERN) and the Steering Group on Promotion and Prevention (SGPP).
• EU added value will be defined in options for action at EU level, both as theoretical concept and in terms of practical scenarios, with a clear distinction from actions recommended at national level.
• extended patient consultation (survey) on the identified scenarios;
• a European ‘consensus conference’ (‘conférence de citoyens’) to present, discuss and review results, engaging society to shape and take ownership of the outcomes;
• identification of sustainable options for future action, bringing together the results of the scenarios and conference;
• a final report, in English, outlining the options for future action and outcomes of the project and measuring its impact; the executive summary of the report will be translated into various EU languages;

All project activities will be implemented in close collaboration with relevant Commission services, and relevant EU-funded activities in the area of rare diseases (e.g. Joint Action on Rare Diseases, IRDiRC, future EJP on rare diseases).