The main focus of the Australia Pompe Association is to be a support to all patients, carers and friends. We are here to reassure them that they are not alone in their journey with Pompe and that we, as an association, are here to help.
The aims of the Australian Pompe Association are:
Communication of information relating to the treatment of Pompe disease firstly and to Glycogen Storage Disease secondly.
Establishment of a responsible body for the acknowledgement by Australian and overseas medical authorities and pharmaceutical companies for members to receive advice on the progress of new therapies against Glycogen Storage Disease.
Participation by members in treatment and clinical trials of medicine against Pompe Disease.
Founding of support group of “Friends” to expand the involvement of individual, community and government assistance of physical, emotional and financial aid to members.
To make representation to all known Drug Houses and pharmaceutical companies in Australia and overseas to obtain supplies of drugs pertinent to the treatment of Pompe disease.
To make representation to the Australian Medical Association and the Australian Government Department of Health to enable drugs available either for testing or for clinical trials and/or treatment to be cost free to members.
To be a charitable foundation to raise tax deductible funds to help support our members and to ensure the Australian Pompe Association is sustainable.
Please help us to continue our aim to bring Pompe patients, carers and friends together. Together we are all stronger.
The Australian Pompe association is a not for profit organisation registered with the Australian Charities and Not for Profit Commission (ACNC) and has deducible gift recipient status.