eu public health & research projects

Support for rare disease initiatives is a priority for the European and National Authorities. Orphan Europe is involved in the following initiatives:

EuroWilson
www.eurowilson.org
EuroWilson is a 4 year Co-ordination Action funded by the European Sixth Framework programme. The primary aim is to determine the epidemiology of Wilson’s disease and to plan randomised controlled treatment trials.

European Porphyria Initiative (EPI)
www.porphyria-europe.org
The mission of EPI is to present an up to date approach to the understanding of porphyria, focusing in particular on the prevention and treatment of acute attacks, to provide information and support to families affected by porphyria, and to support and encourage medical research.

Euroglycanet
www.euroglycanet.org
A Co-ordination Action of the Sixth Framework Programme establishing a European network for the advancement of research, diagnosis and treatment of Congenital Disorders of Glycosylation (CDG), a growing group of rare disorders. Orphan Europe is responsible for part of their training and educational activities.

EuroCareCF
www.eurocarecf.eu
Orphan Europe has developed important resources and capabilities in the management of databases and European networks. As a result we are part of the EuroCareCF advisory board. EuroCareCF is a European Co-ordination Action for Research in Cystic Fibrosis.