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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades raras, Rare Diseases International es una iniciativa de EURORDISRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas, RareConnect es una iniciativa de EURORDIS 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