New EUCERD State of the Art report describes national and EU rare disease activities through 2012
The Scientific Secretariat of the European Union Committee of Experts on Rare Diseases (EUCERD) under the framework of the EUCERD Joint Action and with the cooperation and input of the EUCERD members, including EURORDIS, has released its annual report on the State of the Art of Rare Disease Activities in Europe.
Available online, this extensive report captures the rare disease and orphan drug activities at both the European Union (EU) and Member State (MS) levels through the end of 2012.
The five-volume report provides:
Furthermore, the National Resources section of the EUCERD website offers individual country reports describing the rare disease/orphan drugs activities for each country and providing key websites, documents and texts.
The State of the Art report includes a section on patient organisations as they play an active role in rare disease policies, projects and research, as well as in raising public awareness via the international Rare Disease Day. This section provides notably an overview of EURORDIS, the National Alliances and disease-specific patient organisations in the field of rare diseases.
The report offers a progress report of the national rare disease plans that the 2009 Council Recommendation on an action in the field of rare diseases urges each EU Member State to develop by the end of 2013. Other pertinent topics covered in the report include the development of key rare disease resources, such as the Centres of Expertise; European Reference Networks, registries; genetic testing facilities; specialised social services; informational resources; guidelines and recommendations; orphan medicinal product activity – including availability, pricing, reimbursement and incentives; education; research funding and activities at the national and EU levels; and conferences and events. A selected bibliography gathers together key texts, documents, websites, and national and EU level sources. The State of the Art report, useful to stakeholders in all rare disease and orphan medicine areas, is freely accessible via the EUCERD website.
Louise Taylor, Communications and Development Writer, EURORDIS