After the impact on Europe of the US financial crisis two years ago, the EU is now shaken by a new crisis, a crisis of the Euro spurred by the public deficit of Member states. The future of EU is at stake, at least in its vision as a political space for peace, economic growth and quality of life. The answer is not less Europe, the answer is more Europe!
No European policy is possible without a simple, clear strategy, accepted by most interest parties, and with adequate governance. This is what the EU has provided for its most successful policies such as on energy and common markets. And this is what we have now for rare diseases.
We have a clear strategy and objectives spelled out in several policies and legislations. We have the support of the European Commission, the European Council and the European Parliament. We have governing bodies within the EC, with the EU Committee of Experts on Rare Diseases (EUCERD) and at the European Medicines Agency (EMA), with the Committee on Orphan Medicinal Products (COMP). We have international ambition with the International Consortium on Rare Disease Research.
We have structured our action around civil society – with EURORDIS- and around quality medical information – with ORPHANET. In the coming years we will have structured European Reference Networks of Rare Diseases gathering experts, centres and diagnostic labs, and we will have EU wide infrastructures for clinical trials, biological resources and registries.
Our common challenge is now to agree on common good practices and to monitor our achievements. To achieve these goals, we need continued political support – which we can contribute to stimulate through awareness and advocacy – and more resources, which means more budget for the 2014-2020 EU Programmes, in particular for research and public health.
Concrete and worthwhile actions speak to EU citizens. Actions in the field of rare diseases are an example of the need and the usefulness of more Europe today!