EUROPEAN STRATEGY ON RARE DISEASES IS ADOPTED BY HEALTH MINISTERS OF THE EU
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Press Release – June 9, 2009
European Strategy on Rare Diseases is Adopted by Health Ministers of the EU
A European strategy that calls upon Member States to implement national plans for rare diseases, before the end of 2013, was adopted by the Council of Health Ministers of the EU today.
The Council Recommendation is important because it calls for concerted action at EU and national level in order to:
• Ensure that rare diseases are adequately coded and classified
• Enhance research in the field of rare diseases
• Identify Centres of Expertise and foster their participation into European Reference Networks
• Support the pooling of expertise at European level
• Share assessments on the clinical added value of orphan drugs
• Foster patient empowerment by involving patients and their representatives at all stages of the decision-making process
• Ensure the sustainability of infrastructures developed for rare diseases
This adoption marks the culmination of a series of legislative declaratory acts which have paved the way towards the recognition of rare diseases as a public health priority and as an area of unique European added-value for Community action.
EURORDIS and the national alliances for rare disease patients have been at the centre of this process, voicing the patients’ demands for a European policy framework for rare diseases, in every step of the way. Starting with the successful Public Consultation on Rare Diseases in November 2007, followed by the adoption of the Commission Communication on Rare Diseases, in November 2008 and today the adoption of a Council Recommendation on a European Action in the field of Rare Diseases, each step has demonstrated the vital importance of EU action, as well as cooperation between Member States.
The Council Recommendation represents an important milestone for rare disease patients all over Europe. Its adoptions means that patient representatives will be increasingly involved in the rare disease strategies of each Member State and be able to monitor the implementation of key issues for patients, namely support for the social dimension of care and funding for research and patient-led activities.
Now that the policy instruments are in place EURORDIS, together with all other interested parties, will follow-up on the implementation of Council Recommendation at the European and national level.