WRITTEN QUESTION No. 701/98 by Amedeo AMADEO , Salvatore TATARELLA to the Commission. Rare diseases
21. 10. 98 EN Official Journal of the European Communities C 323/65 Priorities are discussed and established annually so as to target calls for proposals each year. The text of the call for proposals for 1998 was discussed at the meeting of the Altener Committee on 25 February 1998. The information brochure contains the list of priorities selected for each action, but also the criteria and methods to be applied throughout the duration of the programme. These criteria and methods of access are, in part, those generally applied in Community calls, but also include those which the Commission, following consultation of the Altener Committee, considers necessary in the light of the priorities. Funding levels are established in Article 3 of the proposal for a Decision. In respect of targeted actions, given that the objective is to reduce unit costs, the establishment of predetermined ranges would prevent the play of competitive forces. (1) OJ C 192, 24. 6. 1997. (98/C 323/85) 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 (1)). 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. (1) OJ C 203, 3. 7. 1997, p. 6. (98/C 323/86) WRITTEN QUESTION E-0701/98 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 (1)). With regard to measures to improve information at Community level, can the Commission make it possible to consult the proposed European database on rare diseases via the Internet and can it clarify the distinction between the ánetworksí (referred to in the second action under the first objective) and áthe groupsí collaboration and networkingí (referred to in the second action under the second objective)? (1) OJ C 203, 3. 7. 1997, p. 6