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

 

 

 

 

 

 

 

 

 

 

 

 

 

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases