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Listening to our community is vital to improving the lives of people affected by POTS. Our Community Surveys help us highlight the often-overlooked economic and health impacts of POTS to policymakers and health bodies, while also guiding how we direct our limited resources and volunteer efforts.
Your input strengthens our advocacy with decision-makers and ensures we focus on what matters most. We welcome responses from everyone in the POTS community—patients, caregivers, and clinicians alike.
Surveys are usually anonymous and de-identified. You can learn more by clicking on each survey and reading the information section before you begin. We ask that you only complete each survey once. Thank you for helping us make a difference.
Our Resource Survey collects information about community experiences with our available resources. Taking just 5-7 minutes, this survey helps us target the most important resources for development and demonstrates to funders the importance of resources to the POTS community. (please complete only once)
CLICK HERE TO TAKE THIS SURVEYThis survey was originally developed to inform the Australian POTS Foundation’s submission to the Parliamentary Inquiry into COVID-19. It continues to collect important insights from people affected by Long COVID or Long COVID Vaccine.
You don’t need a diagnosis of POTS to take part—your responses help us better understand the lived experience of these conditions and strengthen our advocacy for improved healthcare and support services. (please complete only once)
CLICK HERE TO TAKE THIS SURVEYMany young people with POTS—especially those under 25—experience significant disruption to their education due to debilitating symptoms. Yet in Australia, there is no formal data on how many students are missing school or university because of chronic illness, including POTS. This lack of data makes it hard to push for the support and policy change that’s urgently needed.
The Missing School Survey aims to capture real experiences from:
We want to hear from everyone—including those who have missed little or no school—so we can better understand the full range of educational experiences with POTS.
Your input will help us advocate for improved educational support, reasonable adjustments, and fairer access to learning for young people with POTS.
To learn more about the broader impact of chronic illness on education, visit Missing School, an Australian organisation dedicated to supporting students with chronic health conditions.
CLICK HERE TO TAKE THIS SURVEYBelow you will find POTS research studies that are currently recruiting. Each study has been reviewed by our Scientific Committee to confirm it is relevant, ethically approved, and presented in clear, accessible language. Participation is always voluntary, and we encourage you to read the details carefully to decide if it feels right for you.
Please note: these are independent research studies. The Foundation does not provide medical advice or promote specific interventions, so we recommend speaking with your healthcare provider if you have questions about taking part.
If you’re living with POTS or caring for someone who is, you can express interest in joining our Lived Experience Engagement Register for research-related activities. These may include:
By completing the form below, you’ll be added to our list of potential contributors and contacted when relevant opportunities arise. Participation is always voluntary.
Note: Many opportunities are offered first to our members. If you’re not a member and would like to learn more, click here.
Your details will be stored securely and only used to contact you about opportunities you’ve selected, in line with the Australian POTS Foundation Privacy Policy. For further information please contact admin@potsfoundation.org.au