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February 2021

Recommendations from the Rare 2030 foresight study


The Rare 2030 Recommendations: “The future of rare diseases starts today” presents the conclusions of the Rare 2030 Foresight Study, initiated by the European Parliament and co-funded by the European Commission Pilot Project and Preparatory Actions Programme.

This two year study with over 250 experts from across the rare disease community, has resulted in eight overarching recommendations to ensure that the future of 30 million people living with a rare disease is not left to luck or chance.

It sets out the need for a new European policy framework for rare diseases to:

  • Guide  the implementation of national plans for rare diseases with the same measurable objectives.
  • Bring together a refreshed concerted strategy across research, digital, healthcare, social welfare complementing existing legislations
  • Encourage continued investment in the field of rare diseases at both the European and national levels to ensure we do not lose momentum.

The eight final recommendations covering diagnosis, treatment, care, research, data and European and national infrastructures sets out the roadmap for the next decade of rare disease policies.