6th Workshop, Barcelona: “Do Rare Disease Patients Have Real Access to Orphan Drugs in Europe?”

6th Workshop of the Eurordis Round Table of Companies:

“Do Rare Disease Patients Have Real Access to Orphan Drugs in Europe?”

 

June 9th, 2007

Barcelona, Spain

participants    at a workshopThis workshop revealed the true extent of inequalities in access to orphan drugs that rare disease patients face in some EU countries. It helped raise awareness of the factors and stakeholders that influence the fate of orphan drugs after their centralised marketing authorisation at the EU level. Full transparency in this area and an open dialogue between all the actors are the only way to ensure that the orphan drug field becomes fully recognised as a priority in all of Europe and is sustainable and compatible with the different MS health systems in the long-term. Several avenues to improve orphan drug availability to patients were discussed.

Participants: 61

Key feature: the EURORDIS 4th European survey on access to Orphan Drugs was presented for the first time.

Programme

Concept Paper

Proceedings

For ERTC Members only, this document is password protected. If you want to become a member, find out more here or contact Anne-Mary Bodin, Operations Assistant.

 

 
 
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