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junio 2019

28th EURORDIS Round Table of Companies Workshop


A New PARADIGM of Meaningful Patient Engagement in the Life Cycle of Medicines

Tuesday, 15 October 2019 (09:00 to 17:00)

Presentations and Proceedings

* This document is password protected. 

This workshop provided valuable information to its participants with the following objectives:

  • Understand which good practices EURORDIS promotes and implements for working with patients to develop therapies for rare diseases
  • Understand the objectives of PARADIGM and how to enable meaningful patient engagement in the product life-cycle as a whole
  • Reflect on the return on engagement as a win-win process between developers and patients
  • Learn about patient expectations with regards to the value of patient engagement (financial value, quality, representativeness)
  • Learn how to implement a Monitoring and Evaluation Framework in your patient engagement activities
  • Understand and use metrics for evaluating Community Advisory Boards (CABs)
  • Reflect and raise awareness on the management of competing interests in a multi-stakeholder environment

Questions:

Please send any questions concerning registration to Martina Bergna at: martina.bergna@eurordis.org