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.

 

 
 
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