WRITTEN QUESTION E-0703/98 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. ))).

Whilst the programme of action is to be welcomed in that it represents a step towards the adoption of a more systematic approach to the problem of rare diseases in the European Union, it is doubtful whether the objectives of the programme can be achieved by means of the resources earmarked for this purpose in the Community budget.

Can the Commission ensure the continuation of the programme beyond 2003 in an attempt to increase as far as possible the effectiveness of many of the proposed measures (for example the monitoring of long-term trends)?

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.