91998E2735

WRITTEN QUESTION E-2735/98

by Christine Oddy (PSE) to the Commission

(1 September 1998)

Subject: Thalassaemia

Will the Commission draw up proposals for a publicity campaign to increase awareness of the importance of screening for Thalassaemia, an inherited genetic blood disorder which is particularly prevalent amongst people of Asian origin whose ancestors came from the Indian sub-continent? A simple blood test can identify carriers of the disorder, for which there is no effective cure and which can lead to premature death.

Answer given by Mr Flynn on behalf of the Commission

(2 October 1998)

The Commission is aware that the hereditary blood disorder, thalassaemia, affects individuals of southern Asian origin as well as those with Greek, Middle Eastern, and African ancestry. The proposed Community action programme on rare diseases(1), which is currently under legislative consideration, identifies the provision of knowledge about rare diseases and the fostering of patient and family support groups among its possible actions. Once the programme is adopted, the question of public awareness campaigns for thalassaemia screening could be considered in this framework.

(1) COM(98) 232 final.