Privacy Policy

The following statement explains our policy regarding the personal information we collect about you.

 What personal information do we collect?

Personal information is any information that enables AUSNMD to recognise you as an individual. AUSNMD collects the following data with your consent, if you choose to provide this data:

  • Your name (if you contact us)
  • Your email (if you contact us)

How does AUSNMD collect your data?

AUSNMD will process the information you provide for the purposes stated during its collection. AUSNMD will receive your data (name and email address) only when you contact us using the provided "Contact Us" form.

The website does not automatically capture or store personal information, other than logging the user’s IP address and session information, such as the duration of the visit or the type of browser used. This is only used to provide statistics so as to evaluate the use of the site. This is the use of "Cookies". For more information about Cookies, please see below.

How will AUSNMD use your data?

If you have used AUSNMD's "Contact Us" form, AUSNMD will use your data (name and email address) to reply to you.

Links to other websites included on the AUSNMD website are not managed by AUSNMD. As such, AUSNMD has no control over their content or privacy policy.

Does AUSNMD have access to the ANMDR database?

AUSNMD is partnered with the Australian Neuromuscular Disease Registry (ANMDR). However, the ANMDR is a completely separate database. AUSNMD does not have access to, nor will AUSNMD request or attempt to access, any of the information you may choose to share with the ANMDR. The ANMDR has strict policies on data privacy and security. For more information about the ANMDR, please visit their website.

Retention of data

AUSNMD stores your personal information only for so long as may be necessary. AUSNMD will not sell, trade or rent your personal information to others, and will only share your information with our service providers if required.

Your data will be collected and stored on AUSNMD’s database. All platforms have the appropriate security and safety measures around them to protect your data, and they do not have the ability to use your data without AUSNMD’s knowledge or consent.

In an emergency and/or as required by law, AUSNMD may disclose your information without your consent.

Your rights over your personal information

You have the following rights in respect of personal information about you which is held by AUSNMD:

  • The right to know how AUSNMD uses your data.
  • The right to access your data – you can request a copy of the information AUSNMD holds about you, which will be provided free of charge within one month. If there are repeated or burdensome requests for your data, there may be a charge.
  • The right of rectification – you can ask AUSNMD to update or amend the information held about you if it is incorrect.
  • The right of portability – you can ask for a copy of your data in electronic form.
  • The right to restrict processing – you can ask AUSNMD to stop using your information for marketing purposes, or request that AUSNMD stops processing data about you for certain purposes (e.g. profiling)
  • The right to be forgotten – you can ask AUSNMD to remove your personal data from their records. This is not an absolute right – for example, if you have made a donation, AUSNMD will need to hold the information about the transaction for accounting purposes, but AUSNMD will anonymise any data as far as is possible.

In the event that you are unhappy about how AUSNMD has handled your request in respect of your personal information held and wish to make a complaint about this, please contact the Office of the Australian Information Commissioner (website address: ; telephone number: 1300 363 992).

AUSNMD keeps this Privacy Policy under regular review and any updates or amendments will be posted on our website. This version of our Privacy Policy was most recently updated in October 2021.

How to contact us

If you have any questions about this Privacy Policy or our use of your information generally please do not hesitate to contact us by using the "Contact Us" link.


How Cookies are used by AUSNMD
Cookies cannot be used to identify you personally.

These cookies usually store a session ID that is not personally identifiable to users, allowing you to move from page to page without having to log-in repeatedly.

Session cookies are never written on the hard drive and they do not collect any information from your computer.

Session cookies expire at the end of your browser session and become no longer accessible after the session has been inactive for a specified length of time, usually 20 minutes.

These pieces of information are used to improve services for you through, for example:

  1. enabling a service to recognise your device so you don't have to give the same information several times during one task
  2. recognising that you may already have given a username and password so you don't need to do it for every web page requested
  3. measuring how many people are using services, so they can be made easier to use and there's enough capacity to ensure they are fast
  4. analysing data to help us understand how you use our services so we can improve them
    Cookies are stored in the computer's memory only during your browsing session and are automatically deleted from your computer when the browser is closed.

Our use of third party Cookies

We do use Google Analytics software to help us improve the usability of our website, the type of information gathered relates to the amount of time spent on the website and the pages visited. No personal information is held. 

Google Analytics

Cookie Name: _utma 
Typical content: randomly generated number 
Cookie Expires: 2 years

Cookie Name: _utmb 
Typical content: randomly generated number 
Cookie Expires: 30 minutes

Name: _utmc 
Typical content: randomly generated number 
Expires: when user exits browser
Cookie Name: _utmz 
Typical content: randomly generated number and information about how the page was reached (eg directly or via a link, organic search or paid search) 
Cookie Expires: 6 months

Cookie Name: __utmmobile 
Typical content: randomly generated number 
Cookie Expires: 2 years 

For further details on the cookies set by Google Analytics, see the link below.
Cookies set by Google Analytics

How to opt out of cookies
Our website works better with cookies enabled. Our cookies don't give us or anyone else access to your personal data. We advise you to keep cookies enabled. However, you can choose to reject cookies.
You can use your browser to delete and reject cookies. There are instructions on how to delete cookies and how to control cookies by using the 'About Cookies' website. Note: This website is not managed by AUSNMD. As such, AUSNMD has no control over their content or privacy policy.

We have placed cookies on your computer to help make this website better. For more information please click here

By continuing to use this site or closing this panel, we'll assume you're OK to continue. You can view our full privacy policy here