The number has been multiplied by 4, since only four had such a strategy in 2009. And seven more countries are well advanced in developing them. As the application of these strategies is just beginning, follow-up at EU level is necessary. This is according to a report published today on the implementation of the Commission Communication (2008) and the Council Recommendation (2009) on action in the field of rare diseases. Other advances include broad access to information about rare diseases via the Orphanet database, the authorisation of more than 90 orphan medicines – which benefit rare diseases patients, and close to 120 collaborative research projects funded by FP7 with a total budget of over €620 million. A disease is classified as 'rare' when it affects fewer than 5 in 10,000 people, yet taken together rare diseases affect between 27 and 36 million people in the EU. The European Commission is committed to maintaining its coordinative role in rare diseases, and its support for the development and implementation of high quality national rare diseases strategies in the EU.
Please click here to access the report.
A downloadable pdf is accessible here.
More information on EU action on rare diseases.