Alpha-1 Org Australia is a charity dedicated to Alpha-1 Australians.
We provide support and advocacy as well as promote educational research aimed at advancing breakthroughs and ultimately finding a cure.
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 2023
On behalf of the board, I am delighted to present our 2022-2023 Annual Report.
When I commenced this journey, I was aware of the challenges associated with obtaining treatment access for people with Alpha-1 Antitrypsin Deficiency (Alpha-1) and medical gaps in knowledge.
While remaining dedicated to our vision to have affordable treatments, it seems clear that we need ongoing education and new evidence ti support subsided treatment and improved outcomes for those affected by Alpha-1.
Gaynor Heading (PhD) Med, President.
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.
Are you struggling to cope?
Around 1 in 5 Australian adults experiences a common mental health issue each year. A diagnosis of Alpha-1 Antitrypsin Deficiency can cause mental distress, anxiety, or depression. We have a mental health first aider who can help.