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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases