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

Draft programme

This workshop will provide 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

Registration

Registration for the 28 ERTC Workshop is now open!

  • ERTC members will receive an email with the link to register
  • If you are a patient or patient advocate and you wish to take part, please contact Martina Bergna <martina.bergna@eurordis.org>

This event is recommended for the following target audience:

  • Pharmaceutical and biotech representatives with expertise in:
    • Clinical Project Management, Science Policy, Clinical Development, Medical Science, Research, Medical & Innovation, Medicines Development, Research & Development, External Science & Partnering, Clinical Scientists, Legal & Compliance Affairs
    • Regulatory Affairs
    • Patient Advocacy, Public Affairs, Patient Engagement, Patient Partnership, Patient Support
  • Medical device companies
  • Rare disease patient representatives engaged in active Community Advisory Boards (CABs) or those in creation

Venue

Recinte Modernista de Sant Pau

Carrer de Sant Antoni Maria Claret, 167
08025 Barcelona
Spain

Travel Directions

Welcome Dinner

There will be a Welcome dinner on Monday, 14 October starting at 19.30.

Venue:

El Principal de l'Eixample
Carrer de Provença,
286-288, 08008

Dress code: Smart casual

Accommodation

Please make your own hotel reservations and travel arrangements.

Please refer to our list of hotels close to the workshop venue if needed.

Questions:

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

 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Социальная сеть RareConnect предоставляет пациентам, их семьям и специалистам многоязычную платформу для обмена информацией и опытом RareConnect Программа Rare Barometer — это инициатива EURORDIS, направленная на проведение исследований по преобразованию опыта пациентов с редкими заболеваниями в цифры и факты, которыми можно поделиться с ответственными руководителями. Rare Barometer День больных редкими заболеваниями – международная кампания по привлечению внимания к проблеме редких заболеваний, которая по инициативе EURORDIS ежегодно проводится в последний день февраляRare Disease Day Приняв участие в Европейской конференции по редким заболеваниям и орфанным препаратам (EUCERD), которая по инициативе EURORDIS проводится каждые два года, вы получите возможность побывать на самом представительном европейском форуме по проблемам редких заболеваний.European Conference on Rare Diseases