10th Workshop, Barcelona: “EURORDIS Strategy 2010-2015 and Partnership with the ERTC Members”

10th Workshop of the Eurordis Round Table of Companies:

“EURORDIS Strategy 2010-2015 and Partnership with the ERTC Members”

 

June 19th, 2009

Barcelona, Spain

To mark the 10th anniversary of the ERTC Workshops, this meeting focussed on the EURORDIS’ vision for the future, a vision shared by the US National Organisation for Rare Disorders (NORD) with whom a close collaboration is being implemented to coordinate efforts at a global level. This strategy will benefit the development of orphan drugs and will have a direct positive impact on the lives of patients living with a rare disease, in the two continents and beyond. This workshop was also the opportunity to take stock of five years of fruitful partnership with the pharmaceutical companies supporting EURORDIS via the ERTC.

Participants: 50

Key feature: for the first time, participation from Peter Saltonstall, the newly appointed CEO of NORD, symbolised the start of an official collaboration between the two rare disease organisations. In the afternoon, the breakout sessions facilitated discussions on ways for industry of collaborating with EURORDIS on different specific actions.

Programme

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 raras, Rare Diseases International es una iniciativa de EURORDISRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas, RareConnect es una iniciativa de EURORDIS 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