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Rare Diseases Task Force

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Rare Diseases Task Force. Established in January 2004. Secretariat ... Orphan drugs ... The reality of Orphan Drugs ' Current Workshop. Joint initiative ... – PowerPoint PPT presentation

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Title: Rare Diseases Task Force


1
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)

2
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

3
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

4
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

5
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 

6
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
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