Rare2030 is a project that applies foresight to the future of rare disease policy in Europe. Foresight is a tool that provides us with different future scenarios and sets out road maps for how we can reach them through changes in policies and strategies so to better shape our tomorrow

In Rare2030, policies aimed at lessening the impact of rare diseases will be identified through a review of literature and European and national level initiatives in rare diseases – for example, 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. This knowledge base will allow a Panel of Experts to consider what new trends (both specific and not specific to rare diseases) will drive change.

 

Through a number of workshops, interviews and surveys throughout 2019 and 2020, we will ask a Panel of Experts, representing all types of stakeholders in the rare disease community including patients and young citizens, to participate at every step of the foresight process.

 

They will highlight and prioritize a number of key trends and drivers of change – for example, medical innovation, patient empowerment, equity or economy.

 

 

By combining different progressions of these trends, we will build a number of possible scenarios depicting the world for people living with a rare disease through 2040. Will we live in a society that emphasises rare disease policies at the national or the European level? Will investments be focused on medical innovation? Will all patients have access to the highest quality of care and expertise. How can we manage all of these efforts with shrinking health budgets? How do we address the ethical issues presented by emerging technologies? Patients and their carers will express their expectations.

 

Together we will come up with a set of policy recommendations throughout 2030 that will lead us to preferred scenarios. These varying scenarios will depict different future realities with different sets of policies and choices to get there. With foresight we will be able to visualize change and set out a clearer path for the future we want for people living with a rare disease in Europe.