Our Australian Pompe's Association was formed in 1997 with, at that time, just four members.
Our Patron is Professor John J.Hopwood, from the Lysosomal Diseases Research Unit, at the Women's and Children's Hospital, in Adelaide.
The Aims and Projects of our Association are:
1. Communication of Information on Pompe's Disease and available treatment, to Pompe’s Patients, their Carers and the Australian Community.
2. Obtain sufficient funding to ensure the APA is able to operate effectively.
3. To make representation to the Australian State and Federal Governments,to ensure funding is available to secure ongoing and effective treatment for all Pompe’s Patients.
4. To ensure that all Pompe’s patients in Australia will receive the most effective treatment, support and care available.
5. To make representation to the Local, State and Federal Governments to ensure adequate financial support is available, to all Pompe’s patients, to cover the cost of their treatment, ongoing care and well being.
We are also affiliated with the International Pompe Association (the IPA).
This network of patient interest groups world-wide have achieved much in the past and have a vital role to play in the future. The IPA has created a world precedent in the way it has joined the scientific, pharmaceutical and patient communities. It has given every Pompe’s patient an unequalled understanding of the latest developments in research and drug development. Those who attend the annual IPA conferences get to know the leading scientists and drug company decision makers, who make the decisions that will affect the daily lives of all Pompe’s patients. The annual IPA conferences also provide an opportunity for scientists and drug company executives to see the human element of their work goals. The open dialogue these conferences have initiated, have hugely benefited each of these groups.
It is in every patient’s best interests to join the Pompe’s Support Group in your country. They can inform you of up-to-date news in the Pompe’s world and may be able to assist you in your journey towards treatment.
If you live in Australia, you can join our Australian Pompe’s Association by contacting us.
If you live in a country other than Australia, please look here to find out who the representatives are in your country, and how to contact them.
