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This motto was chosen because the findings of all the recent research ( a.o. endogenous galactose production, bone density, etc) leads to more understanding of what would be the best ‘treatment’ and may help us to come to an agreement on the European treatment on short term.
The meeting of the EGS in the year 2004 took place in Lille / France. It was attended by representatives of Austria, Belgium, Denmark, France, Germany, The Netherlands, Switzerland and the United Kingdom.
| AGENDA 2004: |
| General Part of the EGS-meeting |
- Minutes 2003, Financials, Meeting 2005, etc.
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- EGS-newsletter (Topic newsletter 8;
decide on topic newsletter 9)
- Fulda – Conference
- Website
- Diet-passport
- Influence on declarations of products
- Scientific projects
- Definition of new actions/projects
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Scientific Part of the EGS-meeting |
- Galactosaemia in France, an update by Prof. Saudubray
- Diet recommendations for Galactosaemia in France, from SFIEM group by mrs. Wenz
- Correlation phenotype-genotype, an update by Dr. Brivet
- Report of Study on Bone Metabolism in Galactosaemia, by Dr. E. Rubio
- Short speech by mr. Charles Sulman, representative of Hotel Ville de Lille
- Report of the Dusseldorf-group by Prof. Dr. Schadewaldt
- Structure, organisation and plans of the Centre of Competence
- Study on In vivo galactose tolerance in Galactosaemia
- Report of Study on endogenous galactose production, by drs. Huidekoper
- Discussion - part I: European diet/treatment
- Discussion - part II: e.g. European co-operation in research and sharing information, Fulda-conference, SSIEM-Galactosaemia working group, agreed actions, possible new actions, possible projects, etc.
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Below you can find some photos of the meeting. |
