26th EURORDIS Round Table of Companies Workshop

Rare disease therapies: do we get what we incentivise?

 

Wednesday, 21st February 2018 - Brussels

 

The 26th ERTC Workshop brought together 136 participants from over 70 different healthcare companies and organisations.

The development of rare disease therapies requires the right regulatory, economic and political ecosystem to ensure that investments are made in areas where research would not otherwise be carried out. The current European regulatory framework has brought enormous benefits to the rare disease community in terms of the number of orphan designations and indications, as well as paediatric medicines. However, there is increasing political scrutiny of incentives for research and development constantly linked with the high price of innovative medicinal products, whilst at the same time the vast majority of rare diseases are not yet covered by an appropriate therapy. Whilst the current incentives systems have addressed many issues, some remain.

This workshop was successful in:

  • taking a balanced look at the role of incentives in therapies development,
  • exploring interests and positions on the forthcoming joint evaluation of the legislative framework for orphan and paediatric medicines, as well as the current evaluation of the incentives system,
  • addressing the shortcomings of the current system and collectively reflecting on better and more innovative approaches to fulfil important unmet medical needs.

 

Number of participants: 136

Programme 

Concept Paper 

Proceedings

The proceedings from this event will be available soon.

Questions

Please send any questions to Anne-Mary Bodin: Anne-mary.bodin@eurordis.org

 

 

 

 

 

 

 

 

 

 

 

 

 

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases