Joining the dots to tackle rare diseases

How can the European Health Data Space connect real world data with health system change?

Tuesday, 27 September 2022 | 15:00-16:30 | Kursaal

Organised by CSL Behring with participation of European Haemophilia Consortium

Health data is pivotal to expand disease knowledge, progress R&D and innovation, strengthen and adapt healthcare systems, inform policies and practices; and ultimately improve patients’ lives – all the more so in the area of rare diseases.

How will the European Health Data Space (EHDS), a major pillar of the European Health Union, allow us to build a robust and harmonised European health data ecosystem for rare diseases? How will it help develop a strong evidence base in Europe to support safety, efficacy and value assessment of transformative therapies? What does a successful EHDS look like, that supports quality care for rare disease patients and ensures patient engagement in decisions concerning use of their data?

Join this session to explore the role of the European Health Data Space in defining tomorrow’s care pathways for rare diseases using the case study of haemophilia.

Session recording


  • Emmanuel Bacry, Scientific Director, French Data Health Hub
  • Amanda Bok, CEO, European Haemophilia Consortium
  • Niamh O´Connell, National Haemophilia Director, National Coagulation Centre, St. James´ Hospital, Ireland
  • Karen Pinachyan, Head of Medical Affairs Europe, CSL Behring
  • Richard Bergström, Vaccine Coordinator, Ministry of Health & Social Affairs, Sweden
  • Jerome de Barros, Policy Officer, European Commission Directorate-General for Health and Food Safety


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