You are invited to participate in The Australian Rare Diseases Survey of Adults. This study is being conducted between 21 July and 1 September 2014, by the Office for Population Health Genomics, Department of Health WA in partnership with Rare Voices Australia (RVA), The Genetic and Rare Disease Network (GARDN), Genetic Support Network Victoria (GSNV) and the Association of Genetic Support Australasia (AGSA).

The purpose of this research study is to explore the healthcare experiences of adults living with a rare disease in Australia. This includes your experiences of: diagnosis, access to information, support and treatment; use of health services; patient registries, clinical trials and research.

We invite you to participate in the survey if you are:

  • Aged 18 years or older and living with a rare disease in Australia, or
  • A carer or paid support worker is permitted to complete the survey if the person aged 18 years or older living with a rare disease does not have the intellectual and/or physical capability to complete the survey

The responses you provide will be very helpful for us to obtain a comprehensive picture of the health care experiences of people living with rare diseases in Australia.  It will provide important information that can be used to advocate for rare diseases, plan for rare diseases at a state and national level and to develop evidence based government policy.

To participate in this study, please click on the link below to the online survey.  The survey is anonymous and takes about 20-25 minutes to complete. We ask you to complete the survey by 5pm (AEST) on 1 September 2014.

Survey Link:
If you know someone else who might want to participate in the survey, please send to them the link to the online survey. 
We apologise for any cross-posting of this information. 
Thank you for participating in this study. All responses to the survey will be collated together. A report will be produced of the survey findings.  If you would like a copy of this report when it is published, or have any questions about the survey, please contact Caron Molster from the Office of Population Health Genomics, Department of Health WA on (08) 9222 6871 or This email address is being protected from spambots. You need JavaScript enabled to view it.

Guy Barnett, Liberal Member for Lyons

Motor Neurone Disease Global Day – 21 June 2014

This Saturday 21 June (tomorrow) is Motor Neurone Disease Global Day. As an Ambassador for Motor Neurone Disease Australia, I feel that it is important to raise awareness of this horrible disease and its impact in the community.

Motor neurone disease claims the lives of almost 800 Australians each year, which is more than two Australians every day.  There are more than 20 Tasmanians living with MND and an estimated 1900 in Australia currently. MND progresses at different rates but most people with the disease die within 2 to 3 years from diagnosis.

For each person diagnosed with the disease an estimated 14 members of their family and friends will live with the impact forever. MND touches the lives of so many people.  I urge people wishing to assist in fighting this debilitating disease to contact Motor Neurone  Disease Australia on 1800 806 632.

This year we hope to raise over $1,000,000 from throughout Australia.

The original media release can be downloaded here

Athanasia Flyer


Athanasia is a photographic exhibition in honour of my father. It will feature around a dozen works, with around 6 that have not yet been displayed in a exhibition context.

I will also be donating 25% of all sales to Motor Neurone Disease Australia.

The exhibition is at "The Stable Gallery", 45 Main Road Moonah, (Back of Cooleys Hotel).

The opening night will be on Wednesday the 4th of June @6pm, and will be on display till the 6th of July. This is a public event so friends and family are more than welcome.

Hope to see you there!


Link to Athanasia Facebook page

The ACL Cricket Club will again pay homage to two of its past legends on Saturday the 5th of October with a charity match in memory of Brendan "Crash" Barry and Leon Skeggs.

Click here to read the article from The Examiner


Led by eminent researcher Prof Teepu Siddique this research group describes unique mistakes in a gene called UBQLN2, which codes for a protein called ubiquilin 2, in five families with the inherited form of ALS. This research group also found that this protein is found in both the inherited and sporadic form of MND, which suggest that this finding could be key to finding a new treatment for the disease. Their findings were published in the prestigious Journal Nature.

An overview of the research from the UK MND Research blog

The abstract of the paper published in Nature

Response to press releases and overview from ALS Canada

Chicago Tribune Story

Check out the video on Fox Chicago News


New insights into the cause of motor neurone disease have been uncovered with a study showing mutations in a specific gene lead to the death of the nerve cells responsible for powering our muscles.

Read the full article here

There is an updated fact sheet on Riluzole available here

You can see photos of the event here

The Allied Professionals Forum was held in Chicago on December 4 2012.

Click for link to Allied Professionals Forum on YouTube