Translating Research to Health Innovation: How can forthcoming legislation pave the way for better care in rare diseases?

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Several European Commission 2012 initiatives will impact healthcare innovation. The Horizon 2020 research programme will seek to link the health industry, public sector and academia in new research clusters. A revision to the Directive on Clinical Trials will seek to promote health research and innovation. Meanwhile, the Transparency Directive will ensure that research efforts translate into faster access to much- needed medicines.

Rare diseases — for which research efforts and access to innovative treatments need to be fostered — is an area of high European added-value, and will be affected by these rule changes in significant ways. Rare diseases embody key challenges for the EU policy-maker seeking to balance efficiency with cutting- edge innovation.

From the perspective of rare disease patients’ needs, the workshop will examine these legislative developments and seek participants’ views on:

• How will Horizon 2020 channel research efforts towards severe and neglected maladies such as rare diseases?

• What solutions will Clinical Trials legislation offer to facilitate research on rare diseases in Europe?

• How will these initiatives link with other EU law such as the Cross-border Healthcare Directive and the Transparency Directive?

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