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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
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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
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative
The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiative
Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative
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.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
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 initiative