27th EURORDIS Round Table of Companies Workshop

"Patient engagement in the product life-cycle and community advisory boards (CAB)"

 

Tuesday, 16 October 2018 - Barcelona

 

The 27th ERTC Workshop of the EURORDIS Round Table of Companies brought together 143 participants from 16 countries around the world.

Discussions at this meeting did not only focus on existing community advisory boards (CABs) and their added value, but also on how to work with patients in new disease areas and start a truly collaborative experience. 

 

The contribution of all attendees played an essential role in this important meeting that succeeded in:

  • Communicating which best practices EURORDIS promotes for collaboration between patients and sponsors to develop medicinal products for rare diseases
  • Sharing information on the objectives and outcomes of PARADIGM
  • Conveying the concept of CABs and the value that CABs can offer (including learning from the experience of existing CABs)

 

Final programme

 

Proceedings

 

Concept paper

 

Presentations

For ERTC members and participants of the workshop only, this document is password protected. 

 

 

Questions

 

If you wish to become an ERTC member or if you have any questions, please contact Anne-Mary Bodin: anne-mary.bodin@eurordis.org

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases