Juste pour dire que l'association Unique organise un week-end de rencontres entre les familles dont l'enfant est porteur d'une délétion sur le bras long du chromosome 4( "deletion 4q" ).
Ce week-end a lieu du 9 au 11 avril 2010 près de Birmingham en Angleterre.
Voici le programme du samedi, les autres journées étant bcp plus libres et faites principalement pour que les familles se rencontrent.
Provisional programme 4q deletions study weekend : Saturday April 10th 2010
From 9.15 am Families meet each other, refreshments available. Meet the crèche workers.
9.30-10.00 Genetics and 4q-
Including an unusual case of someone with a deletion from 4q33
Dr Eugen Strehle, International Centre for Life, Faculty of Medical
Sciences, Newcastle University
10.00-10.30 Clinical and Molecular Characterisation 4q- syndrome:
a Genotype-Phenotype Correlation Study
Dr Taosheng Huang, associate professor, University of California, Irvine
10.30-11.00 Survey among parents of children with 4q-
Dr Eugen-Matthias Strehle, International Centre for Life, Faculty of Medical
Sciences, Newcastle University
11.00-11.15 Question Time
11.15-11.45 Coffee break
11.45-12.45 Sleep issues and how to tackle them
Moira Draper, Sleep Counsellor
12.45-1.00 Creating a 3D image of typical faces in 4q-
Professor Peter Hammond, Professor of Computational Biology,
Institute of Child Health, London
1.00-2.00 Lunch break
2.00-2.45 Realistic expectations of development
Ann Clarke, specialist occupational therapist, Coventry Children’s Community
Learning Disability Team
Dr Prudence Allington Smith
2.45-4.00 Helping make communication more successful
Jill Hoddell, former speech & language therapist
Feeding issues
4.00-4.45 Development: what Brainwave can offer
Also:
1:1 clinics with Dr Sue Price, clinical geneticist and Dr Eugen Strehle
15-minute slots for children to be photographed by Professor Hammond