WRITTEN QUESTION No. 855/97 by Klaus HÄNSCH to the Commission. Galactosaemia - a rare disease
Date: 1997-03-10
Institutions: European Parliament, HAENSCH
Subjects: allergy, consumer information, foodstuff, illness, labelling, lactose, medical research, public health













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91997E0855

WRITTEN QUESTION No. 855/97 by Klaus HÄNSCH to the Commission. Galactosaemia - a rare disease  


Official Journal C 319 , 18/10/1997 P. 0180 





WRITTEN QUESTION E-0855/97 by Klaus Hänsch (PSE) to the Commission (10 March 1997)Subject: Galactosaemia - a rare diseaseGalactosaemia - lactose intolerance - is a very rare syndrome into which virtually no research has been carried out. On the basis of findings to date, sufferers may only ever consume lactose-free foodstuffs, otherwise they run the risk of very severe damage to their eyes, brain and internal organs.It is therefore crucial that they know for definite whether foodstuffs contain lactose. At present, few foodstuffs are labelled up to provide this vital information.1. Is the Commission already examining the particular risks associated with galactosaemia?2. Is it prepared to propose rules requiring foodstuffs containing lactose to be labelled as such?3. Is it prepared to use EU resources to fund research into galactosaemia and the development of technical aids for identifying dangerous substances in foodstuffs?4. What will it do to improve the international exchange of experience between doctors and scientists on rare diseases such as galactosaemia and to make the results thereof public?Answer given by Mr Flynn on behalf of the Commission (14 May 1997)The Commission is well aware of the metabolic disease of galactosaemia and the serious problems caused to those affected.1 and 4. There are no Community actions at present on galactosaemia, or indeed on other rare diseases, but the Commission has included the latter in the list of priorities for programmes in the context of the framework for action in the field of public health ((COM(93) 559. )). Proposals for such a programme, as well as on the issue of medicinal products for rare diseases, are under preparation.2. The Commission is actively investigating the need to change the Community rules for labelling foodstuffs with a view to ensuring that consumers are properly informed about the presence of ingredients which trigger allergy or intolerance, including ingredients containing galactose.At the Commission's request, the Scientific Committee for Food produced a report on food allergies and intolerance, in which the problem of galactosaemia is raised. The conclusions of this report are currently being discussed with the Member States. Moreover, discussions on the labelling of foods which may cause hypersensitivity are also taking place at international level in the context of the Codex Alimentarius.3. No research project on galactosaemia is at present being funded by the Commission in connection with the Biomed research programme in the field of biomedicine and health. However, the Biomed work programme includes research into rare diseases, and galactosaemia belongs to this category; the Commission would look favourably on research projects concerning galactosaemia if they satisfy the required criteria of scientific excellence, innovation and a European dimension.