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pressreleaseJune05.pdf
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EUROCHROMNET MEETING
Monday 20 JUNE 2005
Report
Press
Release pdf
Agenda
Agenda as published in Eurochromnet Newsletter
3, 16 March 2005.
This meeting was organised
the day before the European
Conference on Rare Diseases in Luxemburg.10.00 – 17.00 (lunch: 12.30 – 13.30 ), at the Hotel Ibis Luxemburg
Aeroport.
1. Welcome by Beverly Searle, chair of the meeting: why this meeting.
2.
Notes meeting 15 October (see Annexes Research ‘United’).
3. Presentation of support groups and other interested visitors.
- Also: update of actions support groups.
4. Update actions of Eurochromnet.
- What happened since October 2003, by Annet van Betuw.
5. Meet projects SAFE and Eurogentest (see also Eurochromnet Newsletter 1,
January 2005).
- By
Beverly Searle and Prisca Middlemiss.
6. Unique's Information Project : development of medically-verified,
family-friendly information flyers and booklets about a wide range of rare
chromosome disorders (see also Eurochromnet Newsletter 2, February 2005).
- By Prisca
Middlemiss.
7. ECARUCA; an online database for rare chromosome aberrations.
- By Ilse Feenstra, coordinator of Ecaruca.
8. Discussion and agreement on next steps.
9. Involvement researchers .
- Discussion on participation of researchers and/or institutes in Eurochromnet.
10. Funding issues.
11. Other business.
12. Closing.
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