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.
UPDATE: 18/8/2023 Conference attendance registration email has gone out to registered Australian members. Please check your in box (and junk/spam folder) for your flight and accommodation bookings, and dietary requirements.
Email to speakers and sponsors have also gone out. If you are yet to receive yours, please check your spam folder or please contact secretary@australianpompe.org.au
If you are a member of the Australian Pompe association and have not received your email for flight and accommodation confirmation, please contact secretary@australianpompe.org.au
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
We are have finalized our speakers and the agenda is now (almost) finalized.
We look forward to seeing old friends and meeting new ones.