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

Presentations

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

 
 
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