Australian Pompe Association

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Australian Pompe Association

The Australian Pompe Association is a support group for parents and patients who are living with a d

Pompe disease is a rare degenerative muscle disease affecting less than 70 Australians. It is caused by our bodies lacking or being deficient in an enzyme called ‘acid alpha glucosidase’ that clears waste products called glycogen from the muscle. This waste product accumulates in the muscles which result in progressive muscle damage and severe muscle weakness. This normally starts with our largest muscles, in our backs, legs & diaphragms and moves on to smaller muscles in our hands, face & tongue. Respiratory muscles are also involved, severely affecting pulmonary function and, in time, most - if not all - patients will need ventilator support. Pompe’s Disease can present itself at any age from birth to older adults, its severity often depending on the age of onset, and level of enzyme activity. Babies have the most severe - ‘infantile’ - form of Pompe’s Disease and can develop symptoms in the first few months of life. The ‘infantile’ form of Pompe's Disease will progress very quickly and, without treatment, these babies may not live longer than twelve months due to the time it takes to diagnose and treat these babies. In Australia, we do not currently screen for Pompe Disease at birth. Adding Pompe Disease to the Newborn Screening schedule would give these babies a much better outcome. Pompe’s disease is a progressive disease that without treatment will rob our members of their mobility, their ability to breath without assistance, their ability to eat without assitance and eventually their lives. Luckily for Pompe sufferers, there has been a treatment developed. This treatment replaces our missing enzyme during a 4-5 hour fortnightly infusion. This treatment slows the progression of our disease allowing us to live longer and more normal lives. One of the Australian Pompe Associations goals is to raise awareness about Pompe disease and build a support base to help us petition the Australian Government to support New Born Screening.

15/09/2026

WORLDFair™ 2026 Annual Meeting is this weekend (USA Time)!

The WORLDFair™ Annual Meeting provides education about lysosomal diseases and current treatments for patients, caregivers, healthcare providers, and researchers.

Virtual registrations are available for those of us in Australia who don't mind staying up late with the time difference! Details below:

🌎 World-class experts. Research that matters. A community worth connecting with. 🌎

This Friday, September 18, join WORLDFair™ 2026, organized by the University of Minnesota’s Advanced Therapies team, for a day of learning across lysosomal storage diseases—not just Pompe!

Attend in person at the Minnesota Landscape Arboretum or join virtually from wherever you are. Hear current research and treatment updates, and explore topics that matter to patients and families.

💙 We’re especially excited to see supplements and the role of mitochondrial dysfunction in Pompe back in the conversation—important topics for understanding the disease beyond glycogen buildup.

Make room on your calendar to learn, connect, and feel more empowered in your care. Explore the agenda, register for the virtual experience, and invite another family to join you!

📅 September 18 | 9:30 a.m.–4:00 p.m. Central
🔗 Event details and registration

11/09/2026

Help us pick the theme for our next online social catch up sessions! What interest or topic would you like to discuss with your Pompe community?

Food? Travel? Hobbies? Accessibility aids and tips? Perhaps a session just for the carers?

Comment your suggestions below - all ideas welcome! 👇🏻

10/09/2026

It doesn't matter how you do it or how it looks...what is important is, you are doing it!

There is a TAD in almost every state...an excellent resource for equipment modification.

Dont let Pompe hold you back from what you love. Find a way to do it.

https://www.facebook.com/share/v/1ERw9Zga8b/

08/09/2026

❗️REMINDER ❗
Membership renewal fees are now due and a reminder email has been sent out. If you have any questions or concerns, reach out to Shelley at [email protected]

Keep in mind that your membership must be current in order for you to be invited to our 2027 Patient & Family Forum! 📅🎄‼️

04/09/2026

We are delighted to announce the dates for our 2027 Patient & Family Forum - Save the Date! We can't wait to see everyone! 🎄

28/08/2026

We've starting planning our 2027 Patient & Family Forum. Our African Drumming session was a hit last year. What activities would you like to see next?

24/08/2026

We're trying something a bit different for our next online social catch ups! We'll be hosting a separate Women's and Mens support group.

🗨Womens Group - Tuesday 1 September at 7:00pm
💙Mens Group - Wednesday 2 September at 7:00pm

Zoom links have been sent in the newsletter. We hope to see some new faces at each meeting!

21/08/2026

Sharing our Rare Disease journeys is an important part of raising awareness and advocating for better access to treatments, but that doesn’t mean it’s easy. Sharing, and often repeating, your personal story can sometimes take an emotional toll on you and your loved ones.

Rare Voices Australia have partnered with Genetic Alliance Australia for their next ‘Virtual Kitchen Table’ session to discuss how we can share our stories, safely. Session details are below 👇🏻

06/08/2026

We will be hosting an online Q&A session next Monday 10th August at 7:30pm (AEST) to discuss recent NDIS changes.

All members have been emailed an invitation with more details and zoom link - check your inbox!

04/08/2026

Join Rare Voices Australia’s Rare Disease Disability Kitchen Table Peer Support sessions tomorrow. Details for both sessions below👇🏻

Address

1 Pentridge Blvd
Coburg, VIC
3058

Website

http://www.australianpompe.com/

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