The Rare 2030 Recommendations

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 legislation
  • 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.

Recommendation 1: A European policy framework guiding the implementation of consistent national plans and strategies, monitored and assessed by a multistakeholder body on a regular basis.

Recommendation 2: Earlier, faster and more accurate diagnosis of rare diseases through better and more consistent use of harmonised standards and programmes across Europe, new technologies and innovative approaches driven by patient-needs.

Recommendation 3: A highly specialised healthcare ecosystem, with political, financial and technical support at European and national levels, that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care or treatment.

Recommendation 4: Guarantee the integration of people living with a rare disease in societies and economies by implementing European and national actions that recognise their social rights.

Recommendation 5: A culture encouraging meaningful participation, engagement and leadership of people living with a rare disease in both the public and private sectors.

Recommendation 6: Rare disease research maintained as a priority - across basic, clinical, translational and social research.

Recommendation 7: Data used to its maximum to improve the health and well-being of people living with a rare disease.

Recommendation 8: Improve the availability, accessibility and affordability of rare disease treatments, by attracting investments, fostering innovation and collaboration across countries, to address inequalities.