Brussels, 29/02/2016 (Agence Europe) - During international rare diseases day on Monday 29 February, the European Commission confirmed its intention to launch a call for proposals to get the European Reference Networks (ERN) up and running. It also reiterated its support for initiatives to help patients suffering from diseases.
Disease is considered “rare” when it affects less than 5 out of 10,000 people. These diseases are largely unknown due to their rarity and their medical, psychological and social treatment is often erratic. Overall, there are between 6,000 and 8,000 diseases of this kind. The number of people affected in the European Union is estimated at 30 million, which corresponds to around 6% of the population.
As part of the international rare diseases day event, Commissioners Andriukaitis (Health) and Carlos Moedas (Research) said: “The European Commission can help in many different ways: pooling knowledge and expertise, registers, data, funds and other incentives for research, in an effort to find new treatments and introducing them as quickly as possible on the market and promoting cooperation to help reduce the costs of medicines”. In their long list of examples, the directive on orphan medicines (141/2000/EC) can be highlighted, as well as the directive on cross-border healthcare (2011/24/EU), available funding under the Health and Horizon 2020 Programme and the rare diseases database, etc. The Commission also confirmed that it would be launching a call for expressions of interest for developing European Reference (ERN), as stipulated by the directive on cross-border healthcare. The two Commissioners explained “These networks should provide more opportunities for sharing knowledge and pooling expertise Europe wide”.
The theme of international rare diseases day 2016 was “Join Us in Making the Voice of Rare Diseases Heard”. (Original version in French by Sophie Petitjean)