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

 

Concept paper

 

Presentations

For 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

 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases