Help Us Achieve Our Mission
There are many ways you can help our work towards creating a brighter future for those living with POTS, through advocacy, support and research. This page is your best starting point for finding a way (or ways) that you can join our mission.
Contribute Financially To Help People Living With POTS
The Australian POTS Foundation is a registered charity committed to improving support, education and research for those living with POTS. We are reliant on the generosity of those in the community who wish to partner with us financially to see our mission realised. If you would like to support us in this endeavour then please consider giving financially by clicking on the ‘donate’ button below. Even the smallest amount will help to build a better future for those with POTS in Australia. Your contributions will be used to:
- Develop POTS educational material for the general public, clinicians, patients and their carers
- Run patient and clinician education sessions and support medical research into POTS
- Provide PhD ‘top-up’ scholarships in order to attract Australia’s best young minds into the field of POTS research
- Fund community engagement activities that benefit those with POTS in Australia
- Provide advocacy for better recognition and provision of POTS treatment in Australia
POTS Donation Form
Advocacy: Spread The Word And Help Raise Awareness
The Australian POTS Foundation is dedicated to raising awareness of POTS amongst the Australian medical community and the governmental health sector.
For too long POTS has been the ‘forgotten’ syndrome and those with POTS are often left with inadequate access to appropriate diagnosis and care.
The Australian POTS Foundation hopes to work towards coordinated advocacy for better recognition and access to government funded care for all Australians who are challenged by this condition.
Please watch this space for more information on how to get involved with POTS advocacy in Australia.
Please consider contacting your MP and asking them to ‘pledge’ to work towards access for appropriate diagnosis, treatment and care through the public health system for those with dysautonomia. Carers and family members may join you in this campaign.
You can find you local MP be searching with your postcode on this link
Key points for your email
These key points are to help you write your own email. There is a template email below if it is easier for you to copy and paste the text.
- Please show your support for people with dysautonomia by supporting our request for pledges from MP’s and our state and national health ministers to improve the care and health services for this community.
- Dysautonomia has multiple sub-types the most common being postural orthostatic tachycardia syndrome (POTS). POTS is a profoundly debilitating condition affecting predominantly women of child-bearing age. Prevalence in Australia is currently unknown due to the absence of an ICD code for tracking illness, but international estimates suggest up to 1/100 young women may experience POTS in their lifetime.
- Add a few sentences explaining your experience of POTS. Focus on how it has limited your ability to work/study/socialise and briefly describe the lack of access to assistance you have encountered through the health system.
- There are no TGA approved medications for dysautonomia in Australia. Currently, the two most common, and highly prescribed medications by specialists, are not available on the PBS and are prohibitively expensive for many. This creates a vast inequity of access to appropriate management of the condition.
- Those with POTS are advocating for equity of access to diagnosis, treatment, and care through the Australian public health system to improve their quality of life and their ability to reengage in their communities.
- The pledge we are asking you to sign is “Everyone in Australia with dysautonomia should have access to public autonomic specialist services for an initial assessment, subsidised medication and ongoing therapy and support as required.”
Note: Remember to include your full name and address in the email. Including your address is how your MP knows that you are in their constituency.
Feel free to copy and paste this template email and add your personal story.
If you’re struggling to copy and paste from the webpage, you can click this link to down download the text in a Word document.
Dear MP name
As your constituent, I am emailing to inform you of the lack of public and private health services currently available for those with dysautonomia in Australia.
Dysautonomia is a profoundly debilitating condition of the autonomic nervous system affecting multiple systems within the body. The most common form of dysautonomia is postural orthostatic tachycardia syndrome (POTS). POTS predominantly affects women of childbearing age (although all ages and genders may be affected) and results in sometimes severe disability and incapacity. 25% of people with POTS are so unwell that they cannot work or attend education despite their relatively young age.
POTS may be triggered by environmental exposure to viruses such as glandular fever and Covid-19 and has been shown to be a dominant feature of ‘Long Covid’. This has precipitated an unprecedented demand for assessment and treatment of the condition. Unfortunately, in Australia there are only a handful of specialised clinics that provide diagnosis and treatment of POTS. All these are available only in the private sector and they currently have unacceptably long waiting lists.
The absence of an ICD and/or DRG code means public health authorities are disincentivised to treat people with POTS. We note that an emergency unique ICD-10 code has been activated as of October 2022 in the USA. A process is underway for application in Australia, but this is likely to take some time and we are of the opinion that the escalation of cases due to the pandemic means the situation is of the utmost urgency.
Historical medical misinformation and institutionalised gender biases have unified to obstruct implementation of basic physician education on how to diagnose and treat autonomic dysfunction as well as adequate research into the cause and effectiveness of treatments for the condition. A vast gap in medical knowledge exist in both primary and secondary care leaving sufferers with little in the way of adequate access to help in Australia.
Lastly, there are no TGA approved medications for dysautonomia in Australia. Two of the most common, and highly prescribed medications by specialists [midodrine and ivabradine], are not available on the PBS for POTS and are prohibitively expensive for many. This creates a vast inequity of access to appropriate management of the condition.
[ADD YOUR PERSONAL STORY/CONNECTION WITH POTS AND DESCRIPTION OF YOUR EXPERIENCES WITH THE HEALTH SYSTEM HERE]
#unseenunheard is an annual global event run by The Australian POTS Foundation to raise awareness of the thousands of people with POTS who are unseen and unheard by our health system and who are denied the basic right to adequate diagnosis, and treatment through the public system.
Please consider joining people with POTS and their carers to pledge your support.
If you join #Unseenunheard you will be asked if you want to sign the following pledge:
“Everyone in Australia with dysautonomia should have access to public autonomic specialist services for an initial assessment, subsidised medication and ongoing therapy and support of their condition.”
I would be grateful if you could let me know if you will make this pledge on behalf of your constituents and would ask that you would share this pledge on social media.
I look forward to your response.
Add your full name and address
Every time you send an email, if you have one of our email signatures in use, your recipients will learn something about POTS and your experience of living with POTS.
The text and images we supply here can be copied and pasted into your email signature settings in most email software or systems.
25% Of People
Text: 25% of people with POTS are so disabled by the condition they are unable to attend work or study. Find out more at potsfoundation.org.au
Text: POTS is highly prevalent in people with Long Covid. Find out more at potsfoundation.org.au
Living With POTS
Text: I am living with POTS so pacing and balance are very important to me. Please be aware it may take me a few days to reply to you. Thank you
Text: Did you know POTS is the most common form of Dysautonomia? Find out more at potsfoundation.org.au
View our submission to the Australian Parliamentary Inquiry into Long COVID and Repeated COVID Infections
Along with the Australian Dysautonomia and Arrhythimia Research Collaborative (Universtiy of Adelaide), we have made a submission to the Australian Parliamentary Inquiry into Long COVID and Repeated COVID Infections.
This submission outlines numerous recommendations including:
- An urgent call for upskilling of allied health and medical practitioners in understanding of assessment and treatment of autonomic dysfunction
- Reviews of MBS, PBS, NDIS and DSP guidelines to increase accessibility for patients with POTS/Long-COVID
- Increased research funding, specifically to understand economic burden of disease
The full submission can be accessed via the below link, listed as item #167.
Make A Difference By Volunteering
We are a volunteer-based organisation. If you have a vision to spread the word about POTS in Australia then ‘jump on board’. We would love to hear from you if you have the skills to help us with:
- Fundraising activities
- Media and marketing
- POTS Research
- Development of educational material
- Medical advocacy
To explore options, click the button below to visit our contact page.