WRITTEN QUESTION E-0700/98 by Amedeo Amadeo (NI) and Salvatore Tatarella (NI) to the Commission (18 March 1998)

Subject: Rare diseases

This question relates to the Commission Communication concerning a programme of Community action on rare diseases within the framework for action in the field of public health and to the proposal for a European Parliament and Council Decision adopting a programme of Community action 1999 to 2003 on rare diseases in the context of the framework for action in the field of public health (COM(97) 225 final - 97/0146 COD ((OJ C 203, 3.7.1997, p. 6. ))). With regard to the methods to be used to tackle rare disease clusters, could the Commission, before setting up the relevant task forces, first of all reach a basic agreement on how to proceed? It should be noted that the Centre for Disease Control, for example, has drawn up some practical guidelines on the subject and that these guidelines need to be adjusted according to the kind of disease, since the strategies to be adopted obviously vary considerably from one case to another.

In this context one should stress the importance of systems for monitoring rare diseases in order to ascertain developments over a period of time and the various levels of incidence at regional level. Since such trends are mainly recognizable only after at least ten years, it is essential for this reason too to ensure that the proposed programme of action continues beyond 2003.

Joint answer to Written Questions E-0700/98, E-0701/98, E-0702/98 and E-0703/98 given by Mr Flynn on behalf of the Commission (6 May 1998)

In its communication on and proposal for a public health action programme on rare diseases ((OJ C 203, 3.7.1997. )), the Commission set out a three-pronged approach: first, to provide knowledge about rare diseases especially for patients, health professionals and researchers; second, to establish, foster and strengthen voluntary organisations involved in supporting people directly or indirectly affected by rare diseases, and third, to ensure an efficient handling of the problem of clusters, which is of key importance for rare diseases.

As regards the first objective, the Commission intends to support the establishment of a European rare diseases database using appropriate means, including the Internet, and will pay particular attention to the quality and comprehensiveness of the information to be made available.

'Networks' indicated under the actions on community information on rare diseases means building structures in and between holders of data, while 'groups collaboration and networking' mentioned in the second actions of the second objective refers to organisations of individuals representing patient and family support groups.

As regards the second objective, the Commission agrees that the Internet ('newsgroups' and 'chatgroups') can also play a very useful role in fostering contacts between patients and professionals, as in most cases people suffering from rare diseases live far apart from one another.

As regards the third objective, the Commission wishes to indicate that the experience from dealing with clusters that are of different character and magnitude, and may be caused by different factors, is unique and most valuable and will certainly lead to the development of guidelines such as those published by the centres for disease control in the United States.

The Commission is unfortunately not yet in a position to indicate the financial framework for the proposal beyond its first year of action (1999) because this will entirely depend on the establishment of the future financial perspectives. Furthermore, the Commission will keep the need for continuing action in this area under review.