The 2013 edition of the report on the State of the Art of Rare Disease Activities in Europe is now online, offering a wealth of information on EU and Member State initiatives
The annual report on the State of the Art of Rare Disease Activities in Europe is now available online. This extensive report, elaborated by the Scientific Secretariat of the European Union Committee of Experts on Rare Diseases (EUCERD) under the framework of the EJA (EUCERD Joint Action) and with the cooperation and input of all members of the EUCERD, provides a comprehensive overview of rare disease and orphan drug activities at both the European Union (EU) and Member State (MS) levels up to the end of 2012 - including the progress of EU Member States in meeting the Council Recommendation, notably in terms of developing a national plan/strategy for rare diseases.
The report is composed of six volumes, the first of which provides an overview of activities in the field in Europe and the last of which is made up of individual reports by country for easier dissemination of up-to-date information at national level concerning national activities For readers who have read previous years’ reports and are familiar with the activities in the field, a synthesis of all the activities taking place in 2012 is proposed in Part II, Key developments in the field of rare diseases in Europe in 2012.
Amongst the topics covered by the report at the MS and EU levels are : the development of centres of expertise; registries; genetic testing resources and activities; patient organisation activities; information resources; guidelines and recommendations; educational initiatives; research and funding mechanisms and participation in EU-level projects; rare disease conferences and events; orphan medicinal product incentives, availability, reimbursement and pricing policies; and specialised social services.
Each section of the report includes a bibliography of sources used, including a list of any European Commission documents referred to and a list of web addresses organised by country listing national sources of information on rare diseases and links to documents concerning national plans or strategies for rare diseases when appropriate. Many stakeholders at national level have contributed once again to the update of this valuable report : they are listed by country and with mention of the validating authority for each country.
All the volumes of the report, useful to stakeholders from all rare disease and orphan drug areas, are freely accessible via the EUCERD website.