25th EURORDIS Round Table of Companies Workshop

The 25th ERTC Workshop brought together 120 participants from over 70 different healthcare companies to discuss their expectations and the potential of future collaboration and interaction with European Reference Networks.

The workshop featured the participation of Mr. Jaroslaw Waligora from the European Commission; Dr. Maurizio Scarpa, EC ERN Chairperson; Prof. Nicoline Hoogerbrugger, Chair of the EC ERN Committee on Data Protection, Ethics & Informed Consent, as well as other key representatives from healthcare companies and patient organisations.

The establishment of European Reference Networks was widely applauded by all stakeholders who recognised their huge potential for collaboration and accelerated research for the benefit of people living with a rare disease.

Healthcare companies and the biopharmaceutical industry stakeholders requested a Call for Action to foster good cooperation between industry and ERNs, under clear vision and common objectives that foster dialogue, partnership, trust, transparency and reputation with society.

Due to the heterogeneous market of the healthcare and biopharmaceutical industry, as well as the diverse portfolio of therapeutic areas with different areas of expertise and sub-specialisation, different approaches will need to be adopted to identify priorities and partnership working on research activities and clinical trials.

Community representatives unanimously called to be involved in the development of a framework for collaboration and to establish rules of engagement between ERNs and industry, building on the existing governing codes of practice and experiences from this diverse stakeholder community.

Number of participants: 120

Programme 

Concept Paper 

Proceedings 

For ERTC Members only, this document is password protected. If you would like to become an ERTC member, find out more here or contact Anne-Mary Bodin, Resource Development Assistant.

 

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases