91998E3417

WRITTEN QUESTION E-3417/98

by Amedeo Amadeo (NI) to the Commission

(24 November 1998)

Subject: Rare diseases

At last, the subject of rare diseases and "orphan" drugs is being discussed at European level. Few people realise that rare diseases (such as rheumatoid arthritis, lupus eritematosus, etc.) are actually well-known diseases despite their low incidence.

Does the Commission agree that it would be appropriate to conduct a comparative study of the situation in the various Member States on the basis of which to launch a series of joint initiatives to address all the scientific and social issues involved?

Answer given by Mr Flynn on behalf of the Commission

(11 February 1999)

The Commission communication and proposal for a public health action programme 1999-2003 on rare diseases(1), aimed to provide knowledge about rare diseases especially for patients, health professionals and researchers; to establish, foster and strengthen voluntary organisations involved in supporting people directly or indirectly affected by rare diseases; and to ensure an efficient handling of the problem of clusters, which is of key importance for rare diseases.

The proposal is still under the codecision procedure (conciliation). Subject to approval by Council and Parliament, the Commission will be in a position to start implementation of the programme in 1999, as foreseen in its proposal.

The Commission was unable to conduct in 1998 a comparative study of the situation in Member States concerning rare diseases since execution of budget line B3-4304 (health and wellbeing) was blocked by the budgetary authority as regards preparatory actions on rare diseases.

(1) COM(97) 225 final.