New EU committee of experts on rare diseases
On May 15th, the EU Committee of Experts on Rare Diseases (EU CERD) was publicly presented for the first time at the European Conference on Rare Diseases – ECRD 2010 Krakow.
EURORDIS Patient representatives appointed to the EU CERD
This assembly of over 50 members brings the Commission’s DG Health, DG Research, DG Enterprise, the European Medicines Agency, the Committee for Orphan Medicinal Products and the European Centre for Disease Control together with representatives of all 27 EU Member States, as well as 4 representatives of patient organisations, 4 representatives of industry and 15 representatives of academia, selected from a variety of areas of expertise.
EURORDIS’ vision of the EU CERD is that it will be instrumental over the next 5 to 10 years in two essential areas to turn the policy vision into reality for people living with rare diseases. The EU CERD will provide policy guidance for the effective implementation of (a) the Commission Communication on Rare Diseases (adopted in November 2008) - through promotion, monitoring, evaluation, opinions, recommendations, reports, including at its own initiative - and b) the Council Recommendation on Rare Diseases (adopted in June 2009) towards national strategies and plans on rare diseases in all Members States by the end of 2013.
Collaterally the EU CERD will advise the Commission on rare diseases for the 8th EU Research Framework Programme and the 3rd EU Public Health Programme, both covering the period 2014-2020 – the period 2010-2012 will be crucial in this regard.
The Committee will be a source of expertise to draw up guidelines and recommendations for the future policy on European Reference Networks of Centres of Expertise, patient mobility as well as rare diseases (newborn screening, gene testing and counselling).
The EU CERD will also assist the Commission in international cooperation on matters relating to rare diseases, enabling Europe to speak with a clearer, more consistent and stronger voice on the international scene.
The EU CERD is a unique three-dimensional committee:
- Multi-stakeholder, it provides an opportunity to enhance the partnership between all rare disease stakeholders - patient representatives, academic experts, industry, national and European decision makers - which is one of the key success factors validated in our common journey to promote and shape rare disease policies.
- Comprehensive, it provides the opportunity to discuss, promote and guide EU policy in all main fields of action relevant for rare diseases such as: research, drug development, information, public health.
- Integrative, it provides the relevant forum to articulate EU policy between the Commission and all Member States and between the MS, while rare diseases have been recognised for their exceptionally high Community added value.
The challenges raised by rare diseases in Europe have already been identified and there are clear policy orientations for the years to come.
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