Links

Information on Pompe disease, treatments and clinical trials are constantly evolving.

Listed below is also a comprehensive list of disability services available in every State in Australia, including the NDIS. If you are having trouble finding resources or not sure where to start finding the right services for you in your state, contact your free nursing support service 1800 369 963

Below are links to some of our partner organisations here in Australia and around the world to help source the latest and most up to date information.

Clinical Trials and Treatment Access

Federal Department of Health
Life Saving Drugs Program

Federal Department of Health
Treatment Application form & Guidelines (PDF)

Clinical Trials within Australia

For a comprehensive list of clinical trials here in Australia, follow the link below. Type pompe disease into search field.

Clinical Trials around the world

For a comprehensive list of clinical trials both here in Australia and overseas, follow the link below. Type pompe disease into search field.

Australian Disability Support Services

Genetic Alliance

Rare Voices Australia

Commercial

Amicus Therapeutics

Astellas Gene Therapies

AAV Gene Therapy

International Support

International Pompe Association

AMDA (Acid Maltase Deficiency Association)

Canadian Pompe Association

Association for Glycogen Storage Disease (UK) Limited

Pompe Support Network- UK

New Zealand Pompe Network