European Workshop on Rare Disease Research
Bridging Patients and Researchers to Build the Future Agenda for Rare Disease Research in Europe
A European Workshop on Rare Disease Research organised by EURORDIS was held March 1st in Brussels. Throughout the day, prestigious speakers, panellists and discussants made the case for RD research to be included in public funding schemes and remain high in the European research agenda.
The event which was co-organised with E-RARE in partnership with the European Commission, Orphanet and EuroPlan, attracted over 100 participants from European and national research authorities, patient organisations, industry, as well as researchers and the media.
In line with this year’s Rare Disease Day focus on « bridging patients and researchers », the Workshop was successful at identifying the future priorities in rare disease research and defining concrete steps to ensure a better collaboration of all interested parties.
Excerpt from the opening Speech by Robert Madelin, Director General Health and Consumers, European Commission (EU) to the workshop
PRESENTATIONS
Research activities in Europe: Trends and determinants
Presented by: Ségolène Aymé, Director of Orphanet
“The E-Rare Network”: Results from survey on scientists’ and policy-makers’ research priorities in the field of rare diseases
Presented by: Manuel Posada, Instituto de Salud Carlos III, Spain, for The E-Rare Network
Role of Patient Groups in Research and their Priorities for the Future
Presentation of results of a survey on the role of Patient Groups in Research and their priorities for the future
Presented by: Fabrizia Bignami, Therapeutic Development Director of Eurordis
The European Commission in rare disease research: Rare diseases in the 7th EU Framework Programme for Research and Technological Development
Presented by: Manuel Hallen, Head of Unit – Medical & Public Health Research - DG Research, European Commission (EU)
“E-Rare”: Networking research programmes on rare diseases in Europe
Presented by: Sophie Koutouzov, E-Rare Coordinator
EUROPLAN – Presentation of the Recommendations to support Rare Disease Research through National Plans and Strategies
Presented by:Domenica Taruscio, Instituto Superiore di Sanita, EuroPlan Project Leader
More information on the event:
Patients & Research:
View the results of the EURORDIS Survey of European Patient Organisations
Related videos:
 Segolène Aymé - Orpha.net |
 Dr. Ryszard Kole. |
 Wills Hughes-Wilson (Genzyme) |
 Yann le Cam (CEO, EURORDIS) |
Author: Eurordis
Photos & videos © EURORDIS
