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 voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. 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