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Rett Syndrome Workshop
diagnosis, genetics, epidemiology, clinical management and the patents perspective
monday 21st november 2005
kerry packer institute for child health research
the children's hospital at westmead
registration and coffee
Associate Professor Elizabeth Elliott Welcome
1. Clinical and Genetic Characteristics of rett
session chair: associate professor Elizabeth elliott
Professor John Christodoulou Diagnosis and Genetics of Rett syndrome
Dr Helen Leonard Epidemiology, clinical variabilty and genotype/phenotype relationships
Mrs Alison Anderson InterRett
general discussion
morning tea
2. parents and families perspectives
session chair: dr yvonne zurynski
Ms Marisa Knott Living with a child with Rett Syndrome
Ms Julie Burnicle Living with a child with Rett Syndrome
Ms Crystal Laurvick Measuring the well-being of families with a child with Rett Syndrome
general discussion
lunch
3. problems and their management
session chair: professor john christodoulou
Mr Michael Johnson Diagnosis and management of scoliosis in Rett Syndrome
Dr Helen Woodhead Fractures and osteopenia
Ms Jacolyn Harris Role of Physiotherapy in Rett Syndrome
Ms Maryke Lawton Role of Occupational Therapy in Rett Syndrome
general discussion
afternoon tea
4. Other problems
session chair: dr helen leonard
Dr Gordon Baikie Dealing with meal time and feeding
Dr Monique Ryan Principles and management of epilepsy in Rett
general discussion
Panel Discussion - all speakers The role and need of multidisciplinary clinics
A/Professor Elizabeth Elliott General discussion, future directions in Rett management and summing up
close