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.

 

 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rariRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno.Rare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases