Welcome to the Lyme Disease Association of Australia, a small yet powerful registered charity and Australia’s peak patient body. We are committed to achieving multi-sector recognition and world’s best practise diagnosis and treatment for Australian Lyme and associated disease patients in Australia.
The Association undertakes activities in six key areas:
- Advocate for individuals and families living with Australian Lyme and associated diseases with governments, doctors, and local communities;
- Facilitate world’s best practise patient care and support;
- Represent the perspective, lived experience and interests of the Australian patient community;
- Act as a conduit between international developments, research, treatments, and other Lyme communities;
- Fundraise to facilitate improvements for people living with Australian Lyme and associated diseases by supporting the education of doctors and other health professionals;
- Fundraise to support research and innovation in epidemiology, diagnosis and treatment of Australian Lyme and associated diseases; and
- Educate the public and medical sector about the risks of Lyme disease and the need for early diagnosis and treatment (early detection makes this an easily treatable disease).
“In the fullness of time the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government, and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration”.
Dr Kenneth Liegner, Physician since 1988
ACNC Charity Tick Approved!
Yes, you heard it hear first. The Lyme Disease Association of Australia is now ACNC Charity Tick Approved.
What does this mean? It means we are accountable and transparent to you, our ever growing community. Charities without the ACNC Charity Tick have had issues with meeting their reporting obligations or had action taken.
LDAA Statement to Government response
The Department’s response is grossly inadequate and completely ignores the responsibility of the Government in its role to protect the health of all Australians. This is a failure of leadership and must be remediated as a matter of urgency.
LDAA statement to Government response
NHMRC News Update
The NHMRC Advisory Committee for Research into Debilitating Symptom Complexes Attributed to Ticks now has a webpage portal to follow the progress.
Dr Richard Horowitz - Never ever give up
Murdoch Pilot Study update
We'd like to thank all the 60 or more 'early adopters' who have already completed their forms and had their samples sent in to the research project. We acknowledge that there's a bit of effort involved and we're appreciative of the contribution to the cause.
The early submitters have assisted in the clarification of procedures and the Murdoch team have updated their website. The requirements for taking part in the pilot study remain unchanged - that is that patients must have a known tick bite and a positive result from any lab for any tick borne disease. You are still able to send your samples if you don't remember a tick bite, but those samples will not be included in the pilot and will be securely stored for future testing.
Unfortunately, volunteers from some states are restricted from participating due to limited availability of blood transportation from some states. The current list for participating labs is:
Laverty Pathology (NSW), QML Pathology (QLD), Dorevitch Pathology (VIC), Western Diagnostic Pathology (WA)
We've been made aware that some doctors could not or would not draw the blood themselves. For patients that have to get the laboratory to take their blood, they may be invoiced. If this causes any financial distress, please contact the Lyme Disease Association of Australia for assistance via email on firstname.lastname@example.org with: a) your details b) a photo of the invoice from the lab c) photo of your Murdoch project application – we will pay the laboratory invoice directly on your behalf and confirm with you.
We have been told that some doctors are concerned about signing the forms and being linked to this project. We respect their choice, we advise you to be persistent in finding a GP. This is simply a project addressing research urgently prioritised by the Chief Medical Officer since July 2014 and there is updated information for doctors on the Murdoch University website to support them in being fully informed.
Remember, if you do not meet the criteria for the pilot study you may still volunteer, but your sample will be stored for possible future studies which are subject to funding and/or other conditions.
Murdoch are accepting financial donations for their tick research - you can give here (select "personal donation, then research tick borne disease" from the drop down box)
Community Affairs Final Report on Lyme-like Illness Inquiry has been published!
There have been 12 recommendations around testing and patient support tabled for the Inquiry into Growing evidence of an emerging tick-borne disease that causes a Lyme-like illness.
You can find them on Page 10, or read the report in full. Or watch the YouTube clip below of proceedings:
All the Senate Hearings in one place!
Couldn't make it to the senate hearings last year? Well, we've got you covered with them all in one place. Head over to SoundCloud and listen to them in all their glory.