WRITTEN QUESTION P-1501/01 by Anneli Hulthén (PSE) to the Commission. Rare disorders.
Date: 2001-05-11
Institutions: European Parliament, Provisional data
Subjects: EU programme, EU research policy, health policy, information network, medical research

C 364 E/130

Official Journal of the European Communities

EN

20.12.2001

The Commission is ready to exert its influence on both sides in order to convince them of the importance
of direct talks on proposals that might be put forward by the Personal Envoy. The Commission is also
ready to give assistance to the implementation of the various stages of the United Nations (UN) Settlement
Plan, namely at the phases of voters identification, repatriation and rehabilitation of the territory. The
Commission had communicated this availability to Mr Baker with whom it remains in contact.

The Commission continues to provide, through its non-governmental organisations (NGO(cid:146)s) partners, food
and medico-sanitary aid for the saharawi
in Tindouf. This aid has to-date reached € 56 million. An
additional € 10 million medico-sanitary and rehabilitation pack has been approved for the current year.
This constitutes a considerable increase in relation to previous years.

The construction of the Arab Maghreb Union will be very difficult without a proper resolution of this
conflict.

(2001/C 364 E/144)

WRITTEN QUESTION P-1501/01

by Anneli HulthØn (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:

(cid:129) 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.

(cid:129) 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.

(cid:129) 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:

(cid:129) Improving health information;

(cid:129) Responding rapidly to health threats;

(cid:129) Addressing health determinants.

20.12.2001

EN

Official Journal of the European Communities

C 364 E/131

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
(cid:145)rapid reaction(cid:146). 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.

(2001/C 364 E/145)

WRITTEN QUESTION P-1504/01

by Patricia McKenna (Verts/ALE) to the Commission

(11 May 2001)

Subject: Transport of animals

In December 2000 the Commission published a report on the implementation and enforcement of the
Transport Directive 91/628/EEC (1) as amended by 95/29/EC (2). It clearly states that most Member States
are not properly enforcing the rules which are designed to protect the welfare of transported animals. The
Commission is also going to propose certain changes to the directive and the annexes, although Parliament
will only be asked to give an opinion on proposals to change the articles of the directive at some time in
the future. The uncontrolled and sometimes illegal transporting of animals (particularly sheep) to slaughter
has been responsible for the rapid spread of foot-and-mouth disease in the UK, France, Netherlands and
Germany. Those sheep would have suffered even if they had not been infected by this dreadful disease.

Does not the Commission agree that changes to the transport rules, more radical than those mentioned in
the report, are necessary and the Parliament should be asked to give its opinion on all proposals to
amended the directive including the annexes?

(1) OJ L 340, 11.12.1991, p. 17.
(2) OJ L 148, 30.6.1995, p. 52.

Answer given by Mr Byrne on behalf of the Commission

(18 June 2001)

The necessity to limit the long distance transport of animals to absolutely essential journeys and to keep
any suffering to a minimum are especially important objectives for the Commission.

The Commission agrees that stricter rules are essential to improve the current situation even if it is not
possible to prevent unacceptable treatment of animals simply through legislation or controls. In this
respect, the Commission stresses that it is imperative that Member States ensure strict implementation of
the Community legislation in place.

In relation to new legislation the Commission has very recently taken initiatives:

(cid:129) to prevent the transport of injured or sick animals, the Commission adopted Decision 2001/298/EC of
30 March 2001 amending the Annexes to Council Directives 64/432/EEC, 90/426/EEC, 91/68/EEC
and 92/65/EEC and to Commission Decision 94/273/EC as regards the protection of animals during
transport (1) to amend veterinary certificates for intra-Community trade of livestock in order to refer to
the fitness of the animals to be transported;