ABSTRACT
This chapter aims to provide practical guidance in the development and management of European reference networks for rare diseases. Recommendations build on experience gained through the pilot reference networks funded through the European Commission DG Sanco call for proposals 2006–2008. The chapter gives a brief overview of the current legal framework and sources of funding for networks; these topics are evolving rapidly as the European Commission is building European Reference Networks as part of healthcare systems, which will be implemented at a national level. It discusses addressing a number of challenges, difficulties and solutions in building and managing a multicultural, multi-stakeholder pilot network for one or a group of rare diseases. While recognising that different diseases in different populations will pose different problems, it is hoped that describing experience will assist other groups intending to embark on a similar project. European pilot reference networks for rare diseases are specialised networks of expert centres.
