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

2. Build up a Community through an Electronic newsletter…. OrphaNews Europe Opt-in service: registration on www.rdtf.org and Orpha.net www.rdtf.org 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