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)
Programme
Advanced programme
Concept Paper
This workshop provided valuable information to its participants with the following objectives:
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Understand which good practices EURORDIS promotes and implements for working with patients to develop therapies for rare diseases
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Understand the objectives of PARADIGM and how to enable meaningful patient engagement in the product life-cycle as a whole
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Reflect on the return on engagement as a win-win process between developers and patients
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Learn about patient expectations with regards to the value of patient engagement (financial value, quality, representativeness)
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Learn how to implement a Monitoring and Evaluation Framework in your patient engagement activities
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Understand and use metrics for evaluating Community Advisory Boards (CABs)
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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