The NHS European Office has responded to a European Commission consultation on EU proposals for a new EU rare diseases strategy.

New rare diseases strategy

The strategy, due to be published in late 2008, summarises all the necessary elements for an effective EU programme in this area. It calls for a global approach to prevent significant morbidity or avoidable premature mortality, and to improve the quality of life, and socio-economic potential of those affected.

Specific areas of work it mentions include:

• A common definition of rare diseases within the EU
• Improved research and development in the field of rare diseases
• Improved prevention, diagnosis and care
• e-Health development to improve information and treatment
• Evaluation of screening strategies
• Accessibility to orphan drugs
• Better codification and classification of rare diseases at EU level
• Establishment and strengthening of national action plans for rare diseases in EU member states
• Establishment of an EU community agency for rare diseases.

The strategy will impact on the UK and the NHS in terms of data collection, treatment processes, and access to drugs. There may also be an opportunity to contribute to research activities and the development of a UK action plan.

Next Steps

The NHS European Office will continue to follow developments in this area. If you would be interested in keeping in touch with these issues, with the possibility to feed in views at future stages, please contact jenny-lee.spencer@nhsconfed.org