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Rare Diseases Task Force Communication Dissemination www.rdtf.org 20 June 2007.

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Presentation on theme: "Rare Diseases Task Force Communication Dissemination www.rdtf.org 20 June 2007."— Presentation transcript:

1 Rare Diseases Task Force Communication Dissemination 20 June 2007

2 Build up a Community through an Electronic newsletter…. OrphaNews Europe Opt-in service: registration on and Orpha.net 8,500 registered readers from 32 countries Started in June 05 as a monthly publication Now publish every two weeks High satisfaction of the readership

3 OrphaNews Europe topics of interest European News –European Policy –from EC funded projects News from Member States initiatives Scientific news: –new RD –New genes –Diagnostic and therapeutic break through Announcements –Major publications /reports –Events/ congresses/workshops… –Call for collaboration / enrollment –Job opportunities

4 Active communication at meetings… First semester 2007 WHO steering group meeting, 17 April 07, Tokyo, Japan CORD meeting, 25 April 07, Ottawa, Canada ICORD meeting, 3 May 07, Paris, France Ministry of Health, 5 June 07, Budapest, Hungary


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