European Haemophilia Consortium (EHC)
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Supporting R&D in rare diseases: barriers and incentives

Brussels, 7 December 2011, 09.00am-12.30pm 

Stanhope Hotel Brussels, Rue du Commerce 9, 1000 Brussels

The 14th Stakeholder Round Table organised by the European Haemophilia Consortium (EHC) focused on the problematic of Research and Devellopment in the field of Rare diseases and the treatments. 

The EHC edited a statement on ‘Orphan Drugs (83 KB)’ and the European regulation. Stakeholders were invited to present their point of view and some perspectives on the Orphan Drug legislation. 

  • Brian O’Mahony: introduction 
  • Dr. A.Hilger {$ext.ml_links.fileSymbol} (2.0 MB): Post authorisation clinical evaluation of novel therapies in Haemophilia to improve the efficacy of products
  • Mr. Y. le Cam {$ext.ml_links.fileSymbol} (2.8 MB): EU Regulation on Orphan Drugs: 11 years on, what challenges remain for patients?
  • Mrs. A. Brabers {$ext.ml_links.fileSymbol} (339 KB): Market exclusivity and the development of Follow-on Orphan Medicinal Products in Europe
  • Mr. Ch. Waller {$ext.ml_links.fileSymbol} (976 KB) and Dr. A. Heathfield: The industry’s views
  • Dr. C. Berens {$ext.ml_links.fileSymbol} (1.6 MB): The place of rare diseases in the Research Framework Programmes
  • Prof. Fl. Peyvandi {$ext.ml_links.fileSymbol} (2.0 MB): Research in bleeding disorders: the importance of access to a choice of treatment for patients with Haemophilia