Recommendations from the Rare 2030 foresight study

THE FUTURE OF RARE DISEASES STARTS TODAY

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 infrastures sets out the roadmap for the next decade of rare disease policies.

Read the full report here!

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases