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

 
 
La voce dei malati rari in EuropaEURORDIS Rare Diseases International, la voce internazionale dei malati rari, è un'iniziativa di EURORDISRare Disease International RareConnect è un'iniziativa di EURORDIS che mette in contatto malati, famiglie ed esperti per condividere esperienze in un forum multilingua e moderato RareConnect Il Programma Rare Barometer è un’iniziativa di EURORDIS volta a condurre indagini con l’obiettivo di trasformare le esperienze delle persone affette da malattie rare in cifre e fatti che possono essere condivisi con i decisori politici.Rare Barometer La Giornata delle Malattie Rare, una campagna di sensibilizzazione internazionale che si svolge l'ultimo giorno di febbraio di ogni anno, è un'iniziativa di EURORDISRare Disease Day La Conferenza Europea biennale sulle Malattie Rare è il più grande incontro di soggetti interessati al tema delle Malattie Rare in Europa. L'ECRD è un'iniziativa di EURORDISEuropean Conference on Rare Diseases