Australian Pompe Association

Home
Australia
Coburg, VIC
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.

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👇🏻

02/08/2026

Some of our Victorian member caught up yesterday for a 'Christmas in August' lunch! It was so great to be able to catch up in person, thanks Catherine Jenner for hosting such a lovely, and delicious lunch! 🎄🍖

27/07/2026

Our next online social catch up will be Tuesday, 4th August at 7pm! All members, carers, friends and family welcome.

Zoom link will be emailed out to all members closer to the event. BYO cuppa and topic to talk about! 😀

21/07/2026

Have you heard about 'Two Mates, 1 Chair'?

The inspiring duo who are travelling the world, navigating travel and disability. Their instagram account follows their adventures and all the creative ways they overcome accessibility barriers.

13/07/2026

It's that time of year again to apply for or renew your membership with the Australian Pompe Association.

All exisiting members have been emailed a renewal form - please be sure to check your inbox and spam folders.

We’re proud to be a 100% volunteer-run organisation. No committee members receive an income; every dollar goes towards our mission.

Address

1 Pentridge Blvd
Coburg, VIC
3058

Website

http://www.australianpompe.com/

Alerts

Be the first to know and let us send you an email when Australian Pompe Association posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Organization

Send a message to Australian Pompe Association:

Want your organization to be the top-listed Non Profit Organization in Coburg?