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.

 

 
 
Die Stimme der Menschen mit seltenen Krankheiten in EuropaEURORDIS Die internationale Stimme für Menschen mit seltenen KrankheitenRare Disease International Ein moderiertes mehrsprachiges Forum, das Patienten, Familien und Experten zum Erfahrungsaustausch zusammenführt. RareConnect Das Rare Barometer Programm ist eine EURORDIS-Initiative, die Umfragen durchführt und die Erfahrungen von Patienten mit seltenen Erkrankungen in Fakten und Zahlen umwandelt, die wiederum Entscheidungsträgern vermittelt werden können.Rare Barometer Eine internationale Aufklärungskampagne, die jedes Jahr am letzten Tag im Februar stattfindet. Der Tag der Seltenen Erkrankungen ist eine EURORDIS-InitiativeRare Disease Day Nehmen Sie am größten Zusammentreffen von Interessenvertretern für seltene Krankheiten in Europa teil und besuchen Sie die zweijährliche Europäische Konferenz für Seltene Krankheiten und Orphan-Produkte (ECRD). ECRD ist eine EURORDIS-InitiativeEuropean Conference on Rare Diseases