European Workshop 'Bridging Patients and Researchers' to Build the Future Agenda for Rare Disease Research in Europe
When?
Monday, March 1st, 2010
Where?
Centre de Presse International (IPC), Résidence Palace, Rue de la Loi 155, Brussels, Belgium.
Draft Programme:
| 08.30 – 9.00 | Registration |
| 9.00 – 9.15 | Opening Speech by Robert Madelin, Director General Health and Consumer Affairs, European Commission (EU) |
| Morning session: | What are the priorities in rare disease research? Researcher’s and Patient’s needs and expectations |
| Chairperson: | Volker Straub, Coordinator of theTreat NMD project, Newcastle University Terkel Andersen, President of Eurordis |
| 09.15-09.45 | Orphanet – Presentation of the RD Platform fact finding study on the determinants of rare disease research trends Ségolène Aymé, Director of Orphanet |
| 9.45-10.00 | Q & A |
| 10.00-10.30 | The E-Rare Network - Presentation of results from survey on scientists’ and policy-makers’ research priorities in the field of rare diseases Manuel Posada, Instituto de Salud Carlos III, Spain |
| 10.30-10.45 | Q & A |
| 10.45.11.00 | Coffee break |
| 11.00-11.30 | EURORDIS – Results of survey on the role of Patient Groups in Research and their priorities for the future Fabrizia Bignami, Therapeutic Development Director of Eurordis |
| 11.30-11.45 | Q & A |
| 11.45-12.45 | Panel discussion chaired by Segolène Aymé, Director of Orphanet |
| Participants: | Birgit Watteraurer, BMBF, Germany Mikka Vikula, Université Catholique de Louvain, Belgium Avril Daly, Fighting Blindness, Ireland |
| Discussion: | Bridging the gap between researchers and patients to boost rare diseases research. Expectations and needs at the national level concerning research on rare diseases. Which priority for resource allocation at the EU and National level in rare diseases? |
| 12.45-14.00 | Lunch |
| Afternoon session: | How to develop a strong policy to advance rare disease research? |
Chairpersons: |
Kerstin Westermark Chairperson of the Committee on Orphan Medicinal Products at the European Medicines Agency Anders Olauson, Eurordis, European Patient Forum and Member of DG Research Advisory Board |
| 14.00–14.25 | The European Commission in rare disease research Manuel Hallen, Head of Unit – Medical & Public Health Research - DG Research, European Commission (EU) |
| 14.25-14.45 | Mini debate: What place and which strategy for rare diseases in FP8? |
| 14.45- 15.10 | Presentation of the E-Rare Network Sophie Koutouzov, E-Rare Coordinator |
| 15.10-15.30 | Mini debate: How to ensure that other Member States join the network? How to best coordinate the national and the European efforts? |
| 15.30-16.00 | EUROPLAN –Presentation of the Recommendations to support Rare Disease Research through National Plans and Strategies Domenica Taruscio, Instituto Superiore di Sanita, EuroPlan Project Leader |
| 16.00-16.15 | Mini debate: What has to be done at the national level to ensure that local actions coordinate with international activities (EU networks of centres of expertise and EU research networks)? |
| 16.15-16.45 | Why and how to invest in rare disease research Take home message – Conclusions and Recommendations Yann Le Cam, CEO of Eurordis |
Co-organised by EURORDIS and E-RARE
In partnership with Orphanet and EuroPlan
With the support of the European Commission
Rare Disease Day Partners: