33rd EURORDIS Round Table of Companies Workshop

Laying the ground for European Action on Rare Diseases:
the role of industry

ONLINE

27 and 28 April 2022

14.00-18.00 CET

 

Programme

Final Programme

Presentations

Access the presentations here.

These documents are password protected.

Workshop Description

Recent EURORDIS Round Table of Companies (ERTC) discussions placed an emphasis on the need for a new ecosystem in Europe that addresses unmet medical needs and ensures sustainability for healthcare systems. In a context of fast-evolving technological advances and scientific promises that have the potential to dramatically improve lives, persisting inequalities remain for the 30 million Europeans living with a rare disease for whom the absence of or lack of access to an approved treatment has yet to be addressed.

Building on previous advocacy milestones in rare diseases, this upcoming workshop will be an opportunity to reflect further on these persisting inequalities through focusing our discussion on key solutions:

  • A common European fund to support the generation of evidence across the whole life cycle of products and to ensure attractiveness of the European R&D ecosystem for rare diseases
  • A consolidated and structured cooperation in Europe on pricing and negotiations

Through these propositions, EURORDIS invites industry to think beyond the revision of the EU general pharmaceuticals legislation by supporting a coordinated and concerted European effort to achieve a renewed policy framework on rare diseases.

 

Objectives

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

  • Enhance understanding of the proposed new policy framework for European Action on Rare Diseases and its key elements
  • Engage participants for preparedness of achieving the proposed new policy framework on rare diseases
  • Consider the work performed by the EURORDIS-EFPIA structured dialogue on improvements to access to rare diseases therapies
  • Contextualize two key proposals (EU fund for generation of evidence and structured cooperation) for improved access to medicines in the context of a comprehensive policy framework for rare diseases that goes beyond current soft/hard legislation relevant to availability, accessibility, and affordability of treatments for rare diseases
  • Provide a platform for expression on points of consensus and concerns within EURORDIS’ two key proposals cited above
  • Prepare participants for the 11th European conference on rare diseases and orphan products (ECRD 2022)

Questions

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

 
 
Голос пациентов с редкими заболеваниями в Европе The voice of rare disease patients in EuropeEURORDIS Созданная по инициативе EURORDIS сеть организаций, представляющих интересы пациентов с редкими заболеваниями их разных стран мираRare Disease International Созданная по инициативе EURORDIS 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