Events

2023 Australian Pompe Association & New Zealand Pompe Network Family Support Forum

Friday 20th October – Sunday 22nd October 2023.

We are excited to announce that this year our Australian and New Zealand Patient Forum will be held at the Pullman Hotel, Hindmarsh Square in ADELAIDE on Friday 20th October – Sunday 22nd October 2023.

Objectives of this year’s meeting (subject to change)

• To bring members together to share patient stories.
• Provide some advice on when to treat Pompe Disease, physiotherapy and new testing methods.
• New treatments, second generation treatment, gene therapy and substrate reduction therapy.
• Vaccines, anesthetics, newborn screening, pre-conception testing, advocacy for change.
• Exercise, diet and nutrition, home infusions, Care4rare support nurse
• Pharmac NZ, how to encourage drug trials
• Fundraising.
• Provide an opportunity for members to talk with and learn from other members and build a support group.

Your membership must be paid up to date to attend this conference. If you are unsure of your current membership status, please email secretary@australianpompe.org.au

All New Zealand Members please send all inquiries to the New Zealand Pompe Network president@nzpompe.network

Expression of interest forms have been emailed out to members and are due back by the 17th of February.

If you have not received yours via email please contact secretary@australianpompe.org.au

We are currently working on finalising speakers and the agenda and will be sending these to everyone once it is confirmed. (topics listed above may change if a speaker unavailable)

We look forward to seeing old friends and meeting new ones.

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

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.