Affiliations: National Institute of Public Health and the Environment, P.O. Box 1, 3720 BA Bilthoven, the Netherlands | London School of Economics, UK
Note: [] Corresponding author.
Note: [] Bureau of International Cooperation, National Institute of Public Health and the Environment, Bilthoven and Division of Obstetrics, Neonatology and Gynaecology, Utrecht University, the Netherlands. (Former Seconded National Expert: Public Health Policy, DG V/F/1 European Commission, Luxemburg.)
Note: [] Visiting Research Fellow, London School of Economics, Principal Administrator, DG V/F/1, European Commission, Luxembourg.
Abstract: The European Community can make a significant contribution in the field of public health by offering the possibility to stimulate work on rare diseases. Genuine economics of scale could be achieved for research into rare diseases by linking at Community level the limited skills and resources available in this field within each individual Member State of the European Union. Persons suffering from rare diseases are often faced with a lack of information: few organizations provide patient support, and the sources of appropriate detection, recognition, treatment and prevention are limited or even non‐existent. Patient support groups can play a key role in rare diseases, thanks to the wealth of knowledge accumulated through their own experience with the disease or through their collaboration with other groups. Intrinsically rare diseases are linked with the phenomenon of clusters. To deal with clusters of a rare disease it is necessary to identify a real increase in prevalence, for example by early warning systems, to determine specific causal factors, to assess the risks and to assuage public concern. It is on these issues that the programme of Community action on rare diseases within the framework for action in the field of public health is focused.
Keywords: Rare diseases, public health, patient organizations, cluster‐handling
