Brussels, 18/11/2014 (Agence Europe) - During its third meeting on 12-13 November last, the European Commission group of experts on rare diseases adopted a recommendation on improving the codification of rare diseases in healthcare systems. This recommendation criticises the lack of data on rare diseases resulting from the different ways in which lists are made at a national level. The group also discussed the introduction of European Reference Networks (ERN) in the European directive on patient rights in cross-border health care, which seeks to help sector professionals and national expertise centres share know-how.
A pragmatic approach and economies of scale are the key to setting up these networks, explained the experts. The group also discussed: cross-border genetic tests for rare diseases and said that these procedures could be improved; incorporating rare diseases into EU social policies, in an effort to develop a more trans-sectoral and holistic approach: - developing research into rare diseases that have not yet been diagnosed. The experts also had a discussion on rare cancers. The next group meeting will take place on 12-13 March 2015 in Luxembourg. The Commission group of experts on rare diseases is taking over the responsibilities of the European Union Committee of Experts on Rare Diseases (EUCERD), which is in charge of providing advice to the Commission on this subject. The group met for the first time on 11-12 February 2014. (IL)