News & Events
July 21, 2014
Annual report on the State of the Art of Rare Disease Activities in Europe

This extensive report provides a comprehensive overview of rare disease and orphan drug activities at both the European Union (EU) and Member State levels throughout 2013

The report includes EU Member States’ progress in developing and implementing a national plan/strategy for rare diseases, as recommended by the Council Recommendation on an Action in the Field of Rare Diseases.

By end 2013, the deadline to elaborate national plans/strategies for rare diseases, most EU Member States had submitted a plan/strategy to their national authorities and sixteen countries have adopted a plan/strategy. France and Spain have implemented and assessed their first plan. As a number one priority, most countries plan to identify and design centres of expertise for rare diseases. Many of these plans/strategies, however, have no dedicated budget for their actions, a result of the unfavourable economic context which may hinder the implementation of defined measures. The next challenge for EU Member States will be to effectively implement and assess these plans, which the new Commission Expert Group on Rare Diseases will follow closely.

The six volumes of the report are freely accessible

READ MORE
Share: