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.