Useful Links

Background to Neuromuscular conditions - Clinical Information

Muscular Dystrophy USA 

National Institute of Neurological Conditions and Stroke 


Australasian Neuromuscular Network

Background to Neuromuscular conditions - Genetics

Centre for Genetics Education, NSW Health

Genetic Myths- MDA USA

Symptom Management 

Breathe Easy, Respiratory Care in NMDs - MDA USA

Muscular Dystrophy NSW Fact Sheets

Times of Transition

Early Intervention

ADHC - Early Intervention

Parent Line

Early Childhood Intervention Australia (ECIA)


Home and School Working Together - Duchenne Foundation

A Teachers' Guide to Neuromuscular Disease

After School

Stepping Out - ADHC

Supported Accommodation - ADHC

Post-Schools Program - ADHC

Health System Transition

Transition Care Network - Booklet for Young People

Transition Care Network - Booklet for Parents

You Are Not Alone - Children's Hospital Westmead


Help At Home - ADHC

Home Care Service NSW

Aboriginal Home Care Service NSW

Catholic Community Services

Northcott Disability Services

Care Packages

Attendant Care Program

High Needs Pool Program

Community Care after leaving Hospital - ComPacks

Community Aged Care Packages (CACP)

Extended Aged Care in the Home (EACH)

Transition Care Program


Enable NSW

Muscular Dystrophy NSW

Northcott Disability Services - Equipment

Northcott Disability Services - Computer Assistive Technoogy (CATS)

Technical Aid to the Disabled (TADNSW)

Independent Living Centre NSW

Information on Disabilities, Equipment, Access and Services (IDEAS)

End-of-life and Palliative Care

Palliative Care Australia

National Palliative Care Directory

Palliative Care NSW

Palliative Care NSW - Directory of Services

Palliative Care Australia - 'Journeys'


National Association for Loss and Grief NSW

Death and Bereavement - NSW Government

Bereavement Care - NSW Health