17th Workshop, Barcelona: "The Value of Orphan Drugs: Efficient for the Patients, Useful to Society?"

17th Workshop of the EURORDIS Round Table of Companies

"The Value of Orphan Drugs: Efficient for the Patients, Useful to Society?"

 

September 28th, 2012

Barcelona, Spain
 

17th workshopIn the current economic climate, the actual value of orphan drugs is misunderstood by society. The concept of value has different meanings for different stakeholders including clinical efficacy, economic value and improvements to the quality of life for patients. One strong recurrent message was the need for early dialogue between all parties involved, in order to improve access to treatment for patients, adaptive licensing being a potentially powerful way forward.
 

Participants : 74

Programme

Concept Paper

 

Proceedings

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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases