Comprehensive overview of the state of play on rare diseases in the EU

The European Union Committee of Experts on Rare Diseases (EUCERD) has published a detailed overview of the state of play in relation to rare diseases activities and orphan medical products at member state and EU level. A range of stakeholders in each EU country has been consulted during the preparation of the report, which has been validated as an accurate representation of activities at national level by the country representatives of the EUCERD. 

The report consists of six parts: 

• Part I: Overview of rare disease activities in Europe
• Part II: Key developments in the field of rare diseases in 2012
• Part III: European Commission activities in the field of rare diseases
• Part IV: European Medicines Agency activities and other European activities in the field of rare diseases
• Part V: Activities in EU Member States and other European countries in the field of rare diseases
• Part VI: Activities at National level in each EU Member State and other European countries in the field of rare diseases

 The main sources of data for the update of the present report were those collected through the systematic surveillance of international literature and the systematic query of key stakeholders carried out in order to produce the OrphaNews Europe newsletter, various reports published by the European Commission (including past reports of the workshops of the EUCERD) and other specialised reports on topics concerning the field of rare diseases and orphan medicinal products.

For the reports: http://ec.europa.eu/health/rare_diseases/publications/index_en.htm