Parkinson's Disease Research Centre -Advocacy

Advocating for people with Parkinson’s disease

Alongside our contributions to research to improve the lives of people living with Parkinson’s disease in the future we are equally committed to advocating for better support for people living with Parkinson’s today.

Our scientists regularly talk at community support groups, we’re one of the founding members of the National Parkinson’s Alliance, and we have a team of volunteer consumer advocates embedded in the centre. When science and advocacy combine, big things happen.

Lived experience of Parkinson’s disease

Using Parkinson’s disease lived experience to inform research

We have a consumer advocates, people with a lived experience of Parkinson’s, embedded in labs throughout the centre, helping influence and shape projects and grants. Consumers, and the knowledge and perspective they contribute, are an integral part of the centre and help drive us to help change their lives.

We recently published our first consumer-led peer reviewed paper which looked “The diagnostic pathway of Parkinson’s disease: understanding patient perspectives in Australia.”

NPJ Parkinson’s Disease, 2025

Abigail

I juggle parenthood with running a business and was diagnosed with Parkinson’s at 40. The whole left side of my body moved slowly, sometimes barely at all. Medication works for me at the moment, which means I can still enjoy my hobbies.

Sheenagh

I was diagnosed with Parkinson’s at 47 and try not to let it be the focus of my life and live life to the best of my ability. I show this in my role as a consumer at WEHI which helps connect researchers and people living with Parkinson’s.

Shane

I was diagnosed with Parkinson’s disease in 2017 and had deep brain stimulation surgery in 2021 which has almost eradicated my symptoms. I joined WEHI as a consumer in 2019 as I wanted to contribute to finding a cure to this devastating disease.

Geoff

I care for my mother who is 88 years old and was diagnosed in 2012. It’s important that older people with idiopathic Parkinson’s can share their stories with the WEHI scientists and as her carer I can represent her experience of the disease.

The National Parkinson’s Alliance

Group photo of people advocating for Parkinson's disease

The National Parkinson’s Alliance is a collaboration of research institutes, support organisations and leaders in the Australian Parkinson’s community who have come together to shape policies, strategies, and initiatives, to advocate for improved support and research funding that will improve the lives of people affected by Parkinson’s across Australia.

The Alliance has been tasked with establishing a National Parkinson’s Action Plan for Parkinson’s, and as a founding member, WEHI has a voice in the future of Parkinson’s research funding and support in Australia.

Clinical trials for Parkinson’s

If you are interested in information on clinical trials in Australia, the following sites are free and available for reference.

Australian Clinical Trials provides information and resources about taking part in, accessing and running clinical trials.

The ANZCTR is an online registry of clinical trials being undertaken in Australia, New Zealand and elsewhere.

If you want to be informed when we are recruiting for clinical trial, please subscribe to the centre’s newsletter below.

Parkinson’s Centre Seminar Series

Our seminar series is unique in Australia. Each month we have presentations from researchers and clinicians around the globe who are at the forefront of the fight to end Parkinson’s. Past seminars have been delivered by Professor Heidi McBride (McGill), Dr Simon Stott (Cure Parkinson’s UK) and many others.

Keep informed of our upcoming seminars and news from the centre by subscribing to our newsletter and visit WEHI’s seminar calendar.