Genetic Testing
Victorian Clincial Genetics Services
Victorian Clinical Genetics Services (VCGS) is a specialist prenatal, childhood and adult genetics service.
VCGS is an Australian not-for-profit subsidiary of Murdoch Children’s Research Institute (MCRI) and is located on-site at The Royal Children’s Hospital (RCH) Melbourne.
VCGS provides an integrated genetic consultation, counselling, testing and diagnostic service for children, adults, families, and prospective parents.
Click on the link to access information about Angelman syndrome genetic testing.
For any enquiries, please contact the team at VCGSgenomics@vcgs.org.au or call (03) 9340 9102.
Medicare Benefits Schedule
Complex Neurodevelopmental Conditions
On 1 March 2023 changes were made across all the medical practitioner items for diagnosis of a Complex Neurodevelopmental Disorder. The changes increase the age of eligibility for these services from <13 years to <25 years of age. This includes the development of a treatment and management plan, and Allied Health items for assessment and treatment services provided to patients with a possible or diagnosed Complex Neurodevelopmental Disorder or eligible disability, including Angelman syndrome. For more information visit Services Australia website.
Angelman Syndrome Clinics
Angelman Syndrome Association Australia works with hospitals around the country to develop Angelman Syndrome Clinics. These clinics provide a multidisciplinary team of medical and allied health professionals who are experienced in Angelman syndrome.
The first Angelman Clinic opened in Sydney in October 1993 and successfully operated for many years due to the dedication and expertise of Dr Robert Leitner (Developmental Paediatrician) and Dr Ellie Smith (Consultant Cytogeneticist). It was established for all families in Australia, however over time clinics have operated in Victoria and Queensland.
Each clinic aims to support people with Angelman syndrome and their families, however services may vary depending on the structure and specialities of the clinic.
The Angelman Clinic in Sydney
The Angelman Syndrome Clinic is located at Sydney Children’s Hospital, Randwick.
Key Contacts:
Dr Rani Sachdev (Clinical Geneticist) and Eleanor Farley (Clinical Nurse Specialist).
The Angelman Syndrome Clinic aims to:
- Help support families, children and adults living with this condition
- Coordinate existing medical treatments in consultation with clinical specialists
- Provide access to psychological and educational assessments/services
- Provide information/services on a range of health issues including: behaviour, development, weight, nutrition, sleep, eyes, neurology etc
- Facilitate family counselling.
Subspecialties:
This clinic includes a developmental paediatrician, cytogeneticist, clinical geneticist, social worker, dietician, neurologist, psychologist, psychiatrist, sleep physician, gastroenterologist and a clinic coordinator.
Clinic Consultations:
Clinic appointments are held throughout the year.
If a clinic appointment is appropriate and where families need to travel long distances (including interstate) to the clinic for a consultation/review, financial assistance for travel and accommodation may be available.
Contact
Telephone: (02) 9382 5342 | Email: Eleanor.farley@health.nsw.gov.au
The Angelman Syndrome Clinic in Melbourne
This is a paediatric clinic and is held at Specialist Clinic A1 at The Royal Children’s Hospital, Parkville, Victoria.
The clinic provides information on a range of health issues for children with Angelman syndrome in Victoria. The specialists have an interest in global research into Angelman syndrome, and the clinic provides an opportunity to connect with families and children who might be interested in participating in research in the future.
The Angelman Syndrome Clinic aims to:
- Ensure all the needs of the children are being met
- Offer advice that might include medication regimes for the treatment of epilepsy, sleep problems, behaviour, and other areas of physical difficulty
- Review the child’s development in self-help skills, therapy for communication skills, cognitive skills and mobility
- Provide feedback to referring paediatrician regarding child’s management.
- Provide information to families about research programs.
Key Contacts: Professor Ingrid Scheffer (Neurology/Epilepsy) and Dr Catherine Marraffa (Developmental Paediatrician).
Clinic Consultations
It is run twice a year, usually in January and July, on a Monday afternoon. Children are only seen if already under the care of a paediatrician. Information from the child’s kindergarten, school or therapists is useful if it is available.
Contact
By referral from the child’s paediatrician. Please post to the following address:
Angelman Syndrome Clinic
Developmental Medicine
The Royal Children’s Hospital
50 Flemington Road
Parkville
VIC 3052
Telephone: (03) 9345 5898 | Email: Neurodev@rch.org.au
The Angelman Syndrome Clinic in Brisbane
The Angelman Syndrome Clinic is a paediatric clinic and is held in the Child Development Department of Queensland Children’s Hospital, Brisbane, QLD.
The clinic provides a multidisciplinary diagnostic, assessment and intervention approach for children with Angelman syndrome in Queensland.
The Angelman Syndrome Clinic aims to:
- Ensure all the needs of the children are being met.
- Offer advice that might include medication regimes for the treatment of epilepsy, sleep problems, and other areas of physical difficulty
- Provide information/services on a range of health issues including: behaviour, development, weight, nutrition, sleep, eyes, neurology etc
- Provide feedback to referring doctor regarding child’s management.
Key Contacts: Dr Honey Heussler, Medical Director, Child Development
Clinic Consultations
The clinic is generally run twice a year. Referral can be made by private paediatrician, other medical specialist, or General Practitioner.
Contact
Telephone: 1300 407 281 | Email: CHQ-REF@health.qld.gov.au
Angelman Syndrome Clinic
Child Development
Queensland Children’s Hospital
PO Box 3474 South Brisbane QLD 4101
Under development
Neurological Rehabilitation/Intensive Programs
Neurological rehabilitation refers to the process of engaging in therapy to improve function and well-being.
Neurological rehabilitation, also called neurorehabilitation, is a type of therapy. This type of rehabilitation therapy aims to help people with neurological conditions and injuries overcome specific physical and cognitive issues and learn new skills. The focus of neurological rehabilitation is to improve the client’s quality of life, independence, and cognitive and motor functions for activities such as :
- Moving around
- Eating and drinking
- Dressing and undressing
- Using the bathroom
- Communicating with others
- Finding orientation within a space
Neurological rehabilitation will usually involve a mixture of different types of therapies, as the program will be designed and tailored to each client’s needs. The exact rehabilitation methods used will differ from client to client. Generally, it will involve three fields of therapy – Physical Therapy, Speech Therapy and Occupational Therapy.
There are many providers around Australia that provide neurorehabilitation (adults) and/or early intervention therapy intensives (children).
NATIONAL
NAPA (Neurological and Physical Abilitation) Centre is dedicated to delivering innovative therapy services to children with a variety of neurological and developmental needs.
Clinics are located in Sydney, Brisbane, Gold Coast and Melbourne with occasional short-term intensives offered at other locations across Australia.
Learn more about NAPA Programs and Registration here
NAPA Resources regarding speech therapy, feeding, occupational therapy etc can be located here
ACT/NSW
Sensory Gym (Hobartville)
Queensland
Physical Evolution – Adults (Burleigh Heads)
Pitter Patter Physio (Physio)
Rothwell Physiotherapy (Rothwell)
Spark Paediatric Therapy (Brendale)
Strong and Courageous (Tugun)
South Australia
The Timmermans Method (Brighton)
Therabees (Glynde)
Victoria
Klint Neuro (Adults and Children; various locations) Cerebral Palsy Education Centre (Glen Waverley)
Ocean Kids (Peninsula/Bayside)
Bright Start Therapy (Seaford)
The Timmermans Method (Dingley Village)
Western Australia
Little Bodies Therapy (Balcatta)
Conductive Education and Rehabilitation
Conductive Education is a unique system of special education and rehabilitation specifically developed for children and adults who have motor disorders and allied difficulties of a neurological origin. it can provide life long management of motor coordination and neurological challenges.
Learn more about Conductive Education:
Conductive Education Queensland