RARE 2030: a participatory foresight study for policy-making rare diseases
Project Lead: European Organisation for Rare Diseases Association
CO-I's: Prof. Franco Sassi & Dr Marisa Miraldo
Funder: European Commission
Duration: January 2019 - December 2020
Building upon the success of European policy in support of rare diseases (RDs) to-date, we seek to use innovative research-based methods to best support future policy decisions for RDs. We seek to propose policy recommendations to guide this future policy by using the participatory foresight approach and additional innovative consensus building methods, encouraging broad and sustainable uptake by patients, all relevant stakeholders, (in particular policy makers) and society at large. By harnessing the expertise and experience of associated and collaborating project partners and an panel of experts made up of representatives of all those benefiting from the projects outcomes, we specifically seek to establish the baseline knowledge required to identify, agree on and rank scientific, technological, social, political, financial and institutional drivers for the future governance and care of RDs in Europe. By exploring and combining trends and existing instruments we intend to develop 3-5 consistent and plausible qualitative scenarios revealing the needs, perceptions and preferences of the RD Community and society at large as well as the policy options leading to these scenarios. Beneficiaries of this project include all stakeholders in the RD community comprised of a broad range of key target groups including healthcare professionals, researchers, industry, policy makers, patient organisations and the 30 million people living with RD and their families.