Rare2030

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Rare 2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to a better future for people living with a rare disease in Europe.

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. Rare 2030 will guide a reflection on rare disease policy in Europe through the next ten years and beyond.

Read more information about the project here!

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