Source: EURLEX
Language: en
Format: md

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# 92001E1501

**WRITTEN QUESTION P-1501/01 by Anneli Hulthén (PSE) to the Commission. Rare disorders.** 
  
*Official Journal 364 E , 20/12/2001 P. 0130 - 0131*

  

WRITTEN QUESTION P-1501/01

by Anneli Hulthén (PSE) to the Commission

(11 May 2001)

Subject: Rare disorders

The programme on rare disorders was adopted in 1999 and demonstrated that there was a real political priority to develop a policy on rare diseases at European level. Now, two years later, it seems the Programme for rare diseases will disappear. All actions undertaken during these two years are now put at risk and the existence of networks and associations is threatened.

Will there be a third call for proposals on rare diseases? What is the future for rare diseases in the framework of the new Public Health Programme and how can the Commission ensure that as part of implementation, some action is taken on rare diseases?

Answer given by Mr Byrne on behalf of the Commission

(18 June 2001)

The Commission considers rare diseases and orphan pharmaceutical products as an area where a high European added value can be achieved and where Community action is needed.

The Community strategy in this domain has been developed in three main policy areas:

- research on rare diseases conducted with the Community framework programmes for Research and Technological Development; the proposal for the next framework programme (2002-2006), as was the case for the Fifth, contains an explicit reference to rare diseases.

- pharmaceutical policy: the Parliament and Council Regulation (EC) No 141/2000, of 16 December 1999 on orphan medicinal products(1) is now an acquis communautaire that is producing concrete benefits for rare diseases patients.

- public health policy: the programme of Community action 1999-2003 on rare diseases represents an important step in the consolidation of the Community policy for this area of public health. Last year, the Commission proposed a new Community public health programme(2) to achieve a better focused approach and synergies between the various actions. The Commission proposal is currently being examined by the Parliament and the Council. This programme will replace all the eight existing public health programmes.The new programme has three main strands of actions:

- Improving health information;

- Responding rapidly to health threats;

- Addressing health determinants.

No specific diseases are mentioned in the future programme to ensure flexibility over the next six years. Projects on rare diseases will certainly continue. The setting up of a European information network on rare diseases, as defined in the rare diseases programme, could be taken up as part of the health information system. The surveillance of certain rare diseases, including work on clusters, may be continued under the rapid reaction. The proposed programme puts an emphasis on informing and consulting stakeholders in the health field, including representative organisations of patients.

During the forthcoming months a specific call for proposals will be published to ensure the execution of the public health budgetary appropriations in 2002.

(1) OJ L 18, 22.1.2000.

(2) OJ C 337 E, 28.11.2000.

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