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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 in the Developmental Assessment Service of The St. George Hospital at Kogarah, NSW.

Key Contacts: Dr Robert Leitner (Developmental Paediatrician), Dr Ellie Smith (Consultant Cytogeneticist), Dr Rani Sachdev (Clinical Geneticist) and Dr Antonia Milner (Paediatric Fellow).

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 and often on Saturdays. However, many consultations/reviews may not require clinic attendance and may be adequately addressed by other means. The Clinic Coordinator determines the most appropriate consultation method, which can include a consultation via Email, Phone, Telehealth/Zoom, or an appointment to attend the clinic. In this way, the clinic becomes more accessible to families throughout Australia and not just in NSW. 

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. 

The Clinic prepares a a report which outlines the medical/ health/ educational/ and support recommendations and provides strategies that may be used by the primary health care provider to help the Angelman syndrome person and their family/ carers.

Contact

Telephone: (02) 8566 1222 or 1300 721 770
 
Angelman Syndrome Clinic Developmental Assessment Service
St. George Hospital
PO Box 90
Kogarah, NSW 2217 

 

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. It is run twice a year, usually in January and July, on a Monday afternoon.

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

Children are only seen if already under 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

Program at Children’s Health Queensland and Senior Medical Officer in Sleep Medicine.
 

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

Early Intervention Intensive Programs

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 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

 

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

Conductive Education Western Australia