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


animated discussionResearch activities in Europe: Trends and determinants
Presented by: Ségolène Aymé, Director of Orphanet

Presentation from the Workshop on RD Research



“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

Presentation from the Workshop on RD Research



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

Presentation from the Workshop on RD Research



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)

Presentation from the Workshop on RD Research



“E-Rare”: Networking research programmes on rare diseases in EuropeResidence Palace, venue for the Workshop
Presented by: Sophie Koutouzov, E-Rare Coordinator

Presentation from the Workshop on RD Research



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

Presentation from the Workshop on RD Research



More information on the event:


Background on the event

Patients & Research:
View the results of the EURORDIS Survey of European Patient Organisations

Related videos:

Segolène Aymé -

Dr. Ryszard Kole.

Wills Hughes-Wilson (Genzyme)

Yann le Cam
Yann le Cam (CEO, EURORDIS)


Author: Eurordis

Photos & videos © EURORDIS

Page created: 05/03/2010
Page last updated: 03/05/2011
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