WRITTEN QUESTION E-3218/03 by John Bowis (PPE-DE) to the Commission. Rare diseases: Evans syndrome.
Date: 2003-10-31
Institutions: European Parliament, Provisional data
Subjects: blood disease, financing, fund (EU), health policy, medical research, research project

C 78 E/492

Official Journal of the European Union

EN

27.3.2004

4. As the Commission received only incomplete information about the measures taken by the Greek
Government to comply with the Court judgement of 13 June 2002 (4), it took the view that Greece
has failed to fulfil its obligations under Article 228(1) of the EC Treaty and addressed a letter of formal
notice, in accordance with Article 228(2) of the EC Treaty. In that context, the Commission will
investigate any information which gives reason to assume that Greece does not apply Community
legislation properly.

(1) OJ C 70 E, 20.3.2004, p. 132.
(2) OJ L 377, 31.12.1991.
(3) Pursuant to Annex II of Directive 75/442/EEC.
(4)

Judgement of 13.6.2002, Commission/Greece, case C-33/01, ECJ Reports p. 5 447.

(2004/C 78 E/0513)

WRITTEN QUESTION E-3218/03

by John Bowis (PPE-DE) to the Commission

(31 October 2003)

Subject: Rare diseases: Evans syndrome

Is the Commission aware of the problems of children suffering from Evans syndrome and of the extreme
and alarming difficulties faced in financing even modestly budgeted medical research projects for
non-genetic rare diseases (including Evans syndrome) in Europe?

Is the Commission prepared to provide financial support to research projects related to the Evans
syndrome (including projects sponsored by the ‘Association Française du Syndrome d’Evans (AFSE)’ in
France and by ‘People in Search of a Cure for Evans Syndrome’ in the UK)?

Given that the EC Pharmaceutical Policy Regulation on Orphan Drugs requires a prior fundamental
understanding of physiopathological aspects of diseases (which is presently absent in the case of the Evans
syndrome) and that the Community’s action on rare diseases is not linked to criteria such as the mortality
rate or the impact of a disease on children (and is in practice too selective, excluding diseases which have
not been researched earlier), could the Commission envisage the creation of a ‘universal fund for rare
diseases’, such as the one that exists in other sectors, to help guarantee the rights of the weakest?

Answer given by Mr Busquin on behalf of the Commission

(10 December 2003)

Rare diseases research is covered under
the Priority 1 Programme ‘Life sciences, genomics and
biotechnology for health’ of the 6th Framework Programme. Competitive calls for projects, involving at
least three independent legal entities established in three different Member States or associated States, are
issued regularly within the context of the work programmes of this priority.

Although this Priority Programme is focused on genomics and biotechnology research, and even though
the Evans syndrome seems to have no genetic basis, the disease may benefit from research undertaken in
this Priority.

Two calls have already been published in 2003.

Although Evans syndrome has not been specifically mentioned in the work programmes of these two first
calls, researchers interested in Evans syndrome may have taken the opportunity to participate in consortia
applying for topics relevant to their research field, such as:

(cid:1) co-ordination of rare disease research in Europe, with various stakeholders from research, small and

medium-sized enterprises (SMEs) and patient organisations;

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Official Journal of the European Union

C 78 E/493

(cid:1) medicines for children;

(cid:1) specific support action to examine the potential and perspectives for cell-based therapies for auto-

immune diseases.

Other calls for proposals will be published in 2004 and 2005. The topics for these calls will be elaborated
through consultation of the scientific community, with the support of the scientific advisory committee
and the Programme Committee of the Priority 1 Programme. Researchers interested in Evans syndrome
may check, once the calls will be published, the opportunity for them to participate in projects relevant to
their field.

Rare Diseases are also given importance in the new Programme of Community action in the field of Public
Health (2003 (cid:1) 2008). As per Annex 2.3 of the new Programme, activities related to rare diseases include
the development of strategies and mechanisms for the exchange of information and prevention. According
to the 2003 and 2004 Work Plans, the two main pillars of actions is the exchange of information using a
European information network on rare diseases as well as the development of strategies and mechanisms
for exchange of information and coordination at Community level to encourage continuity of work and
transnational co-operation as such.
to the Evans
syndrome community, may also be supported.

In this context, projects, which could be relevant

The creation of a universal fund for rare diseases is not envisaged by the Commission.

(2004/C 78 E/0514)

WRITTEN QUESTION E-3222/03

by Proinsias De Rossa (PSE) to the Commission

(31 October 2003)

Subject: Missing persons

In its answer to my question E-1932/01 (1) on contact services for missing persons, the Commission said it
was at that time (September 2001) concentrating on the situation as regards missing children and
teenagers.

What action has been taken on foot of the study (which was due by early 2002) to examine the provisions
existing in this field in the Member States?

What action has been taken on foot of the resolution tabled by Belgium calling on the Member States to
set up national monitoring centres and other centres to combat the disappearance and sexual exploitation
of children?

What action has been taken on foot of the recommendation from the European Conference on Preventing
and Combating Trafficking in Human Beings held in Brussels in September 2002 that a feasibility study be
conducted on the establishment of a European database for missing persons, a recommendation reiterated
by the European Parliament in its recent resolution (2) on the Daphne II programme?

(1) OJ C 40 E, 14.2.2002, p. 142.
(2) P5_TA(2003)0366 (cid:1) A5-0280/2003.

Answer given by Mr Vitorino on behalf of the Commission

(3 December 2003)

The study referred to by the Honourable Member is now available under the title ‘Child Abuse and Adult
Justice. A comparative study of different European Criminal Justice Systems handling of cases concerning
Child Sexual Abuse’. It was conducted by Rädda Barnen (Sweden) with a pan-European partnership. A copy
of this study is sent direct to the Honourable Member and to Parliament’s Secretariat.