Located at:

* The Children’s Hospital at Westmead, Sydney

* The Royal Children’s Hospital, Melbourne

* Queensland Children’s Hospital, Brisbane

Clinics provide support for parents to discuss management of their Rett Syndrome child’s general health, mobility, spine, feeding, nutrition, seizures if applicable, communication, hand function, etc., with a number of health professionals. Each clinic operates differently so although some information is summarised below, we recommend that the clinics are contacted directly.

The Children’s Hospital at Westmead (CHW), Sydney

The hospital has a monthly dedicated Rett Syndrome Multidisciplinary Management Clinic bringing together a range of experts including a dentist, geneticist, genetic counsellor, music therapist, occupational therapist, paediatrician, physiotherapist and a speech pathologist. An orthotist and/or a neurologist can be called upon during a consultation should the need arise. Management issues are addressed on the last Friday of the month and new patient assessments on the 2nd Friday.

Appointments can be made by phoning the Rett Syndrome Clinic Co-ordinator, Lyndal Douglas, on +61 2 9845 3218 or +61 2 9845 3654

The Clinic is now funded by the Hospital, however, from 2004 to 2009, the financial support it needed to operate was provided by the Rett Syndrome Australian Research Fund.

For more information: Metabolic Genetics at The Children’s Hospital at Westmead

https://www.schn.health.nsw.gov.au/find-a-service/metabolic-genetic-disorders/chw

Royal Children’s Hospital (RCH), Melbourne

Medical staff in the Neurodevelopmental and Disability Department provide a secondary referral outpatient service. The service can be accessed by a referral from a Paediatrician or, in special cases, by a GP. RCH provides support to children in Victoria, Tasmania and Southern NSW. Reports are sent to the referring Paediatrician and parents and include care plans and recommendations for screening frequency. Children can be referred for repeat assessments and RCH is able to undertake care sharing with Paediatricians.

Contact: Telephone: +61 3 9345 5898   Email:  neurodev@rch.org.au

For more information: Neurodevelopmental and Disability Department

https://www.rch.org.au/neurodevelopment-and-disability/

Queensland Children’s Hospital (QCH), Brisbane

The Child Development Program at QCH works with families, communities and professionals throughout the Greater Brisbane area to improve the health and well-being of children and young people experiencing development problems. The hospital provides multi-disciplinary diagnostic, assessment and intervention services, including a specialist outpatient clinic at the Queensland Children’s Hospital for children with rare developmental conditions including Rett Syndrome.

Clinic Frequency: Six per year according to demand. Patients are seen every 6-12 months determined by symptom complexity.

Medical Referral: You will need a referral from a GP, Paediatrician or other medical specialist before an initial appointment with the Child Development Program can be made.

Contact: t: 1300 366 039 f: +61 7 3068 5126 e: CDPAccessService@health.qld.gov.au

For more information:

Queensland Children’s Hospital – Child Development Program

https://www.childrens.health.qld.gov.au/service-child-development-program/