Rare 2030 conference update

On 23rd February : The European Commissioner for Health and Food Security, the French and Czech Republic Ministers of Health and Members of the European Commission opened the RARE 2030 Conference, gathering almost 590 attendees together. After two year of continuous work, Eurordis and the European Community annouced the 8 recommendations arising from this work. The future of rare diseases over the next 10 years starts now, comprising :

  • A European policy framework ;
  • Earlier, faster and more accurate diagnosis;
  • A highly specialised healthcare ecosystem ;
  • Guarantee the social and economic integration of people living with a rare disease;
  • Encourage the meaningful participation, engagement and leadership of people living with a rare disease;
  • Rare disease research is maintained as a priority;
  • Data is used at its maximum ;
  • Improve the availiability, accessibility and affordability of rare diseases treatments.