9 December 2009: New EU initiative on rare diseases

European Action Against Rare Cancers welcomes the European Commission’s recent decision to establish a European Committee of Experts on Rare Diseases which will assist in the formulation and implementation of European Union activities in the field of rare diseases.

European Action Against Rare Cancers strongly supports political initiatives that encourage more effective approaches to tackling rare diseases, including rare cancers, in Europe.

We recognize the new Committee of Experts on Rare Diseases as an important step towards promoting more fairness in rare diseases care across Europe, as it will be an instrument to help coordinate actions and exchange best practices, thus maximising the limited resources available. As such, we acknowledge the establishment of the Committee as being in line with the objectives of our Call to Action and the Consensus Recommendations which call for increased coordination and more involvement of all relevant stakeholders in political and practical decisions with an impact on rare cancer care.

For more information about the European Committee of Experts on Rare diseases, please see: http://ec.europa.eu/health/ph_threa...

8 July 2009: 2 weeks already

2 weeks into the campaign we are happy to note that we have already reached 230 signatures supporting the Call to Action Against Rare Cancers. We greatly appreciate all the positive responses to our new initiative – it is a very encouraging start!

24 June 2009: New campaign launched today

European Action Against Rare Cancers was launched on 24 June 2009 to coincide with the publication of the European Commission’s Communication on Cancer. The new campaign urges European policy-makers to prioritise better treatment and care for patients with rare cancers within the framework of the new Commission Communication on cancer and other recent policy initiatives such as the Council Recommendation on Rare Diseases. Read more »