This section is dedicated to the E-Rare and all important events related to the research on rare diseases. It is being updated on a weekly basis.


Thursday, October 30, 2014

As a part of its programme the E-Rare Consortium is organizing the special Symposium dedicated to collaboration in rare diseases research. The meeting will take place on the 30 of October 2014 at Casa dell'Aviatore in Rome, Italy.

The event will present a perfect occasion to gather rare diseases stakeholders: funders, researchers, patients’ organizations and regulatory bodies. 

Three symposium sessions will give an overview on how cooperation among funders, scientists and other relevant stakeholders helps in advancing rare diseases research with ultimate benefit to patients. E-Rare will take this opportunity to present its future plans and activities in the context of the forthcoming "E-Rare-3" action.

Download detailed PROGRAM and POSTER

Session 1: Fostering transnational collaboration for rare diseases research funding

Chairs: Ralph Schuster, DLR, Germany and Domenica Taruscio, ISS, Italy


Daria Julkowska, INSERM/ANR, France

Domenica Taruscio, ISS, Italy

Irene Norstedt, European Commission, Belgium

Paul Lasko, IRDiRC/CIHR, Canada

Session 2: Success stories

Chairs: Milan Macek, Charles University, Czech Republic and Filippo Belardelli, Italy


Arnaud Goolaerts, FNRS, Belgium

Franz Schaefer, Heidelberg University Hospital, Germany

Bernd Wollnik, University of Cologne, Germany

Alessandra Bolino, Fondazione Centro San Raffaele de Monte Tabor, Italy

Mara Dierssen, Center for Genomic Regulation Genes and Diseases Program, Spain

Daniel Scherman, CNRS, France

Session 3: Partners for collaboration

Chairs: Sonja van Weely, ZonMw, Netherlands and Hugh Dawkins, Office of Population Health Genomics, Australia


Victoria Hedley, University of Newcastle, UK

Segundo Mariz, European Medicines Agency, UK

Carlo Incerti, Genzyme, Italy

Yann Le Cam, Eurordis, France

Olivier Menzel, Blackswan Foundation, Switzerland

Daria Julkowska, INSERM/ANR, France

The participation in the Symposium is FREE OF CHARGE. However the number of places being limited we encourage future participants to register HERE as soon as possible.



the following hotels are situated near the venue


Viale Ippocrate, 199

+39 06 44 57 001



Viale delle Province, 103

+39 06 44 29 670



Largo degli Osci, 63

+ 39 06 44 63 565


E-Rare 2012 - Created by Toussaint Biger