Thursday Programme and Presentations

08:30 – 09:00

Opening Ceremony

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09:00 – 09:45

Session 1: Introductory presentations

  • Global overview of rare disease fieldStephen Groft, National Institutes of Health, USA
  • African overview of the rare disease field – Joao L Carapinha, Carapinha & Company, South Africa

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10:15 – 12:15

Session 2: Open discussion groups (break-out sessions)

  • Group A: Diagnostics
  • Group B: Congenital malformation
  • Group C: Global Rare Disease Policies and Programmes
  • Group D: Access to treatment
  • Group E: Research
  • Group F: Improved quality of life
  • Group G: Patient organisations

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13:15 – 15:00

Session 3: Obtaining a diagnosis through available diagnostic procedures

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15:30 – 17:15

Session 4: Congenital malformations

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Sponsored by:

Sanofi GenzymeCSL BehringEquity PharmaceuticalsMarkenPerkinElmerPfizersobiAudentesiConnectNovartisspringernatureCelgeneKarolinska