Rare Diseases Task Force

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Rare Diseases Task Force

• Established in January 2004
• Secretariat funded since June 05
• www.rdtf.org
• Chair Ségolène Aymé (Paris)
• Deputy chair Helen Dolk (Belfast)

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Build up a Community through anElectronic
newsletter.

• OrphaNews Europe
• Opt-in service registration on www.rdtf.org
• 6,700 registered readers from 28 countries
• Start June 05 18 issues so far
• High satisfaction of the readership
• On-line survey in May 06

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OrphaNews Europe topics of interest

• European News
• European Policy
• from EC funded projects
• News from Member States initiatives
• Scientific news
• new RD
• New OD
• New genes
• Diagnostic and therapeutic break through
• Announcements
• Major publications /reports
• Events/ congresses/workshops
• Call for collaboration / enrollment
• Job opportunities

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RDTF Working Groups

• Expert groups to prepare documents of interest
  for the RD community
• To serve the RDTF mission
• To prepare the  Communication  on RD
• Coding and classification
• Centres of reference in Europe
• Orphan drugs development

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EPPOSI

• European Platform of Patients Organisations,
  Science and Industry
• Annual partnering workshop on OD since 2000
  Brussels, Paris, Rome,The Hague, Berlin, London,
  Madrid
• 2007 Workshop
• Copenhagen
• 18-19 October
•  The reality of Orphan Drugs 

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Current Workshop

• Joint initiative of RDTF and EPPOSI
• Preparatory meeting for the EPPOSI workshop
• Selection of topic and speakers
• Preparatory document for the EC Communication
• Open dialogue between experts
• Report will be validated by the group