WRITTEN QUESTION No. 702/98 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, health care profession, illness, information network, patient's rights, telecommunications

C 323/66

EN

Official Journal of the European Communities

21. 10. 98

(98/C 323/87)

WRITTEN QUESTION E-0702/98

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)).

As regards the second objective, can the Commission ensure that the Internet (via the discussion groups) can also
carry out the extremely useful function of promoting contacts between patients and the medical profession, since
in many cases people suffering from rare diseases live a long distance from one another?

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

(98/C 323/88)

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 (1)).

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)?

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

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 (1), 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.