Australia & New Zealand “Pompe-Down Under” Hybrid Patient Forum – 9th October 2021

Our patient conference will be held on Saturday the 9th of October 2021.

We have delayed confirming final details, hoping Victoria and New South Wales would be able to join the conference in the planned Hubs, but alas it has become clear our NSW and VIC friends will not be able to attend these Hubs. Instead, they will be joining us via video link along with our Kiwi counterparts.

We have engaged a company that specialises in running really dynamic, interactive video link conferences, so whether you are watching from a hub or from home, there will be opportunities to ask your questions.

The Hub locations that are going ahead are QUEENSLAND, WESTERN AUSTRALIA and SOUTH AUSTRALIA.

If you have registered for one of these hubs, some details for you are listed below the agenda.

Those members that registered for a hub in VIC and NSW,  will be automatically sent a video link, you do not need to change your registration, we have done this for you.

If you are yet to register, for either a hub or to request a video link, you can do so HERE. The closing date for registrations is Friday 1st October.

Please note, we will NOT be recording this conference, so there will be no way to watch a recording at another time. This is a live event.

The theme for this year is all about the upcoming innovations in therapies, clinical trials, gene therapies and new services available to us now, and in the future, and our very exciting speakers will reflect this.

This year our conference is a half-day event.(max 5 hours)  Our international speakers will be joining us via video link, some live, and some prerecorded due to time differences, with the opportunity for us to ask questions.

Take a look at the agenda below so you can plan your day accordingly, noting the start times and locations for each hub below the agenda.



Sydney (New South Wales) Saturday, October 9th 10 am local time

Perth (Western Australia) Saturday, October 9th 7 am local time

Brisbane (Queensland) Saturday, October 9th 9 am local time

Auckland (New Zealand) Saturday, October 9th 12 noon local time

Adelaide (South Australia) Saturday, October 9th 9:30 am local time

Melbourne (Victoria) Saturday, October 9th 10 am local time





Sydney- Via Video Link
Melbourne- Via Video Link

New Zealand- Via Video Link

Australians, follow this link to request a registration form here.

New Zealand members invitations have gone out with a registration form for the video link via the New Zealand Pompe Network.

National Patient Conference 2018

In October we held our very successful biennial member forum in Noosa on the Sunshine Coast. This was a huge success and gave our Pompe family the opportunity to catch up and meet new members. We also had the opportunity to hear from excellent speakers on a range of topics.

We would also like to once again thank every one who joined us at the forum. Thank you to the members that shared their personal stories, and allow us to tell them again and again.

Our patient stories at the forum are often the most reflective for our group, and show why our association is so important.

National Patient Conference 2016

Members joined us in Sydney from all over the country. This was our first National meeting since the approval of government funding in 2015 so it was a time to celebrate. We were fortunate enough to have Arnold Reuser from the Netherlands who shared with us a wealth of information. We also heard from a range of wonderful speakers on various topics about Pompe disease.

National Patient Conference 2014

Our inaugural national meeting held in Melbourne was a huge success as many patients and their families from all over Australia met someone else with Pompe disease for the first time. Dr Barry Byrne from University of Florida joined us and shared his experience and extensive knowledge of Pompe disease.

After this meeting it was clear that the Australian Pompe Association could best support our members by bringing everyone together, every two years, to learn from and support each other.