WRITTEN QUESTION No. 700/98 by Amedeo AMADEO , Salvatore TATARELLA to the Commission. Rare diseases
Date: 1998-03-18
Institutions: AMADEO, European Parliament, TATARELLA
Subjects: EU programme, action programme, exchange of information, illness, medical research, proposal (EU), public health, scientific research, voluntary organisation

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  (cid:145)networks(cid:146)  (referred  to  in  the  second  action  under  the  first  objective)  and  (cid:145)the  groups(cid:146)  collaboration  and
networking(cid:146) (referred to in the second action under the second objective)?

(1)  OJ C 203, 3.7.1997, p. 6.