is a research project currently funded by the
European Commission , DG Research, 6th Framework Programme (contract
nÝLSSM-CT-2004-503246). It aims at developing information tools to
address in a comprehensive and integrated approach the set of factors
that currently affects research on rare diseases and its coordination.
The specific objectives are:
(1) to develop an information service, freely
accessible on Internet, dedicated to research activities in the field of rare
diseases and orphan medicinal products, including a database of research
projects, funded at MS level and at the EU level, and a database of
collections and research networks.
(2) to develop services aiming at
speeding up the enrolment of patients in clinical research.
(3) to develop
a database of research projects with development potential, to help
scientists and Industry establish the necessary partnerships. Access to OrphanXchange
(4) to
organise a workshop with all stakeholders to discuss known bottlenecks
and find solutions.
The project aims at establishing the platform of services in 11 European
countries in the pilot phase in order to propose an extension to the 25
European countries in 2 years time.
