How to get involved
with our charity.
Alpha-1 Organisation Australia offers three different ways of contributing to the success of the charity.
Volunteer
Stay across open vacancies to volunteer at Alpha-1 Org Australia and discover ways to help spread awareness about alpha-1.
Become a member
Become a member of Alpha-1 Org Australia and get access to additional resources and quarterly newsletters on the latest info.
Make a donation
Donate today to help support Alpha-1 Org Australia’s drive to build awareness and advocate for families suffering with alpha-1.
Annual Report 2024
During 2023-24 we continued our work to help reduce the devastating impact of Alpha-1 on individuals and their families.
This work took many shapes including advice to government and academics on the need for cleaner air as Chronic Obstructive Pulmonary Disease remains a leading cause of death in Australia; providing our mental health support service; advocacy for affordable Alpha-1 augmentation therapy, the only current treatment registered with the Australian Therapeutic Goods Administration.
Liver Foundation – Alpha-1 Antitrypsin Deficiency
- Alpha-1 Antitrypsin Deficiency is a genetic condition that can lead to serious liver and lung problems
- It’s also known as Alpha-1 or AATD
- It affects both children and adults
- You might be tested for Alpha-1 if you are diagnosed with a lung condition and also have liver or skin problems
- If you have Alpha-1, it’s important to look after your liver by eating healthily, losing weight if you need to, exercising, and avoiding anything that can damage your liver
- You should also protect your lungs by not smoking and avoiding lung infections.
The Science of Healing Alpha-1
This is an interesting video about one professional’s long term research into liver damage caused by A1ADy, and the hopeful development of a treatment which aims to limit or even reverse the damage.
While a phase 3 study is recruiting in the US for this drug (Fazirsiran), its worth noting that Dicerna are recruiting for a phase 2 study for their drug (belcesiran – which also uses the principle of RNA interference – RNAi) at St Vincent’s in Melbourne.
Recruiting for Secretary
The volunteer secretary / public officer is a responsible person on the Management Committee and drafts agendas, calls meetings, keeps organisations records in order and ensures compliance with regulators and legislations.
The role is ongoing unless new elected officer at an AGM or Secretary resigns.
Recruiting for State Coordinators
The Alpha-1 Organisation Australia (A1OA) supports members in a number of ways including via the State Coordinator role. State Coordinators are the face of A1OA.
Support A1OA members by making contact and welcoming them, explaining how they can contact you and how they can receive support.
Clinical Trials
The Clinical Trials Search Portal provides access to a central database containing the trial registration data sets provided by the registries listed on the right. It also provides links to the full original records.