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Sarkozy to launch rare disease initiative

This article was originally published in Scrip

Executive Summary

Nicolas Sarkozy, France's president, says he will develop a second national plan for rare diseases next year and put it in place by 2010 at the latest. He has also agreed that the funding established previously for national rare disease reference centres – there are around 100 hospital-based co-ordinating centres in France, each specialised in a rare disease – would be made permanent (Scrip Online, February 8th, 2006). Mr Sarkozy said rare diseases were a priority during France's current presidency of the European Union, estimating that 30 million Europeans suffer a rare disease. A communication on the subject from the European Commission is expected before the end of the year. The Alliance Maladies Rares, a French patient organisation, welcomed news of the plan, saying the first plan had not met all of its objectives.Leem, the French pharmaceutical industry association, hopes that research will be a key element in the second plan.

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