EU initiatives and activities on rare diseases
11.4.2014
Question for written answer E-004603-14
to the Commission
Rule 117
Silvia-Adriana Ţicău (S&D)
Each year the European Union, along with other leading States and regions of the world, allocates significant amounts of money to research, including medical research. In EU countries, a rare disease is considered to be any disease affecting fewer than five people in 10 000. It is estimated that, currently in the EU, 5 000 to 8 000 rare diseases affect 6-8% of the population (27-36 million citizens). According to Council Recommendation No 151/02 of 8 June 2009 on an action in the field of rare diseases, Member States were supposed to identify on their national territory, by the end of 2013, the relevant centres of expertise and, where they do not exist, to establish them. Also, the Commission was invited to produce, by the end of 2013, an implementation report on the aforementioned recommendation, in order to allow the adoption of the necessary measures under the action programmes for 2014-2020.
I would like to ask the Commission which stage this implementation report is in and what specific measure it intends to adopt for the period 2014-2020.
OJ C 399, 12/11/2014