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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)
Many 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 SURVEYThe Australian POTS Foundation encourages and supports Australian-led research to improve understanding, diagnosis, and treatment of POTS.
This section highlights current studies that are actively recruiting participants with POTS. Each research team has applied to the Foundation to share their study, and it has been reviewed by our Scientific Committee for relevance, scientific merit, and ethics approval.
To be listed here, studies must:
Taking part in research is completely voluntary. Each study is different, and we encourage you to carefully read what’s involved and consider whether it’s right for you.
Please note: These are independent research studies and not clinical trials of approved treatments. The Foundation does not provide medical advice or promote specific interventions. We encourage you to speak with your healthcare provider if you have questions about participating.