Links

Organisations and Groups

The Brain Foundation

Australian Spasmodic Torticollis Association – ASTA Vic

Dystonia Network of Australia Inc

Blepharospasm Australia

DBS Dystonia Australia Support Group

Parkinson’s South Australia – Dystonia

Australian Dysphonia Network

Movement Disorder Society of Australia

Neurological Council of WA (NCWA)

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Genetic services and information

Patients should contact their GP/Specialist or a genetic service to discuss genetic testing than contacting a lab or pathology service.

Clinical Genetics Service – Austin, Mercy and Northern Hospital in Victoria

The service accepts referrals for adult and paediatric patients with a personal/family history of Familial neurological and muscle disorders.

  • This may include individuals with a personal/family history of myotonic dystrophy, muscular dystrophy, ataxia, leukodystrophy, spinal muscular atrophy, dystonia, periodic paralysis, congenital myasthenic syndromes, hereditary neuropathy, and early onset dementia/parkinsonism.

Clinical Genetics at The Children’s Hospital at Westmead

The Clinical Genetics service at The Children’s Hospital at Westmead provides consultation and counselling regarding diagnosis and therapy for children and adults with:

  • inheritable disorders
  • chromosomal abnormalities
  • dysmorphic syndromes
  • non-syndromic congenital anomalies and other disorders.

Genetics (Canberra Statewide)

Diagnosis, counselling and support of individuals with, or at risk of, hereditary disorders. Please contact them to confirm if they do genetic testing for Dystonia.

The Royal College of Pathologists of Australasia (RCPA)

Testing for THAP1 (also called “dystonia 6, torsion (autosomal dominant)”, DYT6 ).

Neuromuscular gene tests – Australasia Neurosmuscular Network

The  Australasia Neurosmuscular Network’s role is to ensure quality diagnostic methods, clinical management and equal access to clinical trials or new therapies, for all individuals in Australia and New Zealand affected by neuromuscular disorders.

Dystonia Genetic testing lab (WA)  –  Neurogenetics

Garvan Institute of Medical Research

The institute researches condtions such as Neurological conditions and genetic testing

Genome.One

Part of the Garvan Institute of Medical Research and website  provides information information about Whole Genome Sequencing (WGS)

HUGO Gene Nomenclature Committee (HGNC)

Funded by the US National Human Genome Research Institute (NHGRI) and approves a gene name and symbol (short-form abbreviation).

MyGene2 Portal/Registry

MyGene2 is a global portal through which families with rare genetic conditions who are interested in sharing their health and genetic information can connect with other families, clinicians, and researchers. The genetic cause of most rare conditions is unknown and as a result, most families who undergo exome sequencing or whole genome sequencing do not receive a diagnosis. By sharing information through MyGene2, a family can help and even participate in the discovery of new genetic conditions and the genes underlying these conditions. 

The Garvan Institute of Medical Research assisted with the website and helps families living with rare genetic disease to find others with mutations in the same gene. The aim is to support the 300+ million individuals worldwide living with rare disease to uncover a diagnosis. 

Genetic Alliance Australia (GA)

Facilitates contact between families/individuals affected by the same, or similar condition, and/or provide information about relevant support groups both nationally and internationally. Provides services and support for individuals. GA has an extensive rare disease and genetic database.

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Information

Botulinum Toxin

Ipsen –  Dysport

Allergan – Botox

Allergan- Botox® (onabotulinumtoxinA)

Merz – Xeomin

The Pharmaceutical Benefits Scheme subsidises botulinum toxin (Botox®, Xeomin® or Dysport®) for eligible patients.

FAQs Botulinum Toxin new arrangements from September 2015

Deep Brain Stimulation

Medtronic Australasia

Medtronic Neuro

Medicines/ medical tests/health information

NPS MedicineWise

Medicines Line

Home Medicines Review (HMR) Program

Healthdirect Australia

Better Health Channel

Lab Tests Online-Au

Inside Radiology

Diagnostic Imaging Pathways

Medicare GP MRI Referrals and RACGP Clinical guidance for MRI Referral

Question builder – Create a list of questions to ask your doctor using the question builder. Print the list to take to your appointment.

Top tips for safe health care – booklet to help consumers, their families, carers and other support people get the most out of their health care. You can use the information in the booklet when you talk to your doctor or other health professionals.

After Hours Medical Care

Right Place Right Time National Website: Options for after hours medical care

Healthdirect Australia after hours GP helpline

Healthdirect Australia registered nurse (24 hours)

NURSE-ON-CALL – Victoria

Pain Management

The Australian Pain Management Association

Allied Health/Therapy

Australian Physiotherapy Association (APA)

Home Support and Equipment

Commonwealth Home and Community Care program (HACC)

The Home Care Packages Programme

National Disability Insurance Scheme (NDIS)

State-wide Equipment Program (SWEP)

Aids and Equipment (VIC)

Better Health Channel – Services and Support

Social and Community Health

EACH Social and Community Health

National Health Services Directory

Medicare

Chronic Disease Management – Individual Allied Health Services under Medicare     

Chronic Disease Management (formerly Enhanced Primary Care or EPC) — GP services

Carer Support

Carers Australia

Carer Support

Your Healthcare Rights

Australian Charter of Healthcare Rights

Welfare Rights and Support

National Welfare Rights Network – List of State Networks

Your right to government support

Your rights to appeal a Centrelink decision

National Disability Advocacy Program

Financial Support

No Interest Loan Scheme (NILS)

StepUP Loan

Good Money – community partnership between Good Shepherd Microfinance, NAB, VIC/SA Government

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