EURORDIS launches its declaration on rare diseases at conference held by Maltese Presidency of the EU Council

The Maltese Presidency of the European Union (EU) Council has recently been praised for bringing rare diseases to the top of the EU agenda. Under the auspices of the Maltese presidency of the Council of the European Union has dedicated several policy events to rare diseases. Recently a conference on the Development and Access of Medicines for Rare Diseases, held by the Maltese Presidency of the Council of the EU and the Malta Medicines Authority in Valletta, Malta.

This conference was held in collaboration with the National Alliance for Rare Diseases Support Malta, the Marigold Foundation, E-Rare, EURORDIS, the Innovative Medicines Initiative and RD-Action.
At this event EURORDIS presented a declaration “calling for improved mechanisms of structured cooperation across EU Member States to address the unmet needs of people living with a rare disease.”

The aim of this declaration is to strengthen cooperation between countries in a structured way. It should allow for better transnational integration of health care, research and improved access to innovative therapies and technologies, also benefiting countries on a national scale. In regards to:

  • Healthcare: 24 new European European Reference Networks (RERs) have been set up. The integration of RERs into national health systems will enable patients to obtain better specialized care.
  • Research: other internationally and nationally coordinated initiatives in a sustainable manner are needed to ensure long-term results and a better impact on the lives of patients.
  • Improving access to innovative therapies and technologies for patients: the statement stresses the importance of a structured European approach to accelerate research and development and reduce the cost of drug development. The cooperation of European countries in negotiating drug prices would improve patients’ access to innovative therapies and technologies.

(source: Orphanews 15-05-2017)