Community Surveys
Listening to our community is vital for improving the lives of those affected by POTS. Surveys help us highlight the often-overlooked economic and health impacts of POTS to policymakers and health bodies.
Your input directs our limited resources and volunteer efforts where they’re needed most, while also strengthening our advocacy with politicians and decision-makers. We value insights from everyone in the POTS community—patients, caregivers, and clinicians alike.
To contribute, please respond to the surveys by clicking the links below. Each person is encouraged to complete each survey only 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. To take this survey, CLICK HERE
The EconoPOTS Survey collects information about the socioeconomic impact of POTS, including loss of income, medical expenses, financial strain, and quality of life. This vital information is presented to the Australian Federal Government to advocate for health policy changes that address the needs of the POTS community.
The survey is anonymous, comprehensive, and open to both people with POTS and their carers. It takes approximately 20-40 minutes to complete and will not ask for any identifying information. We encourage everyone to participate in this survey once, as your insights are critical to driving meaningful change.
This survey is now open. Please complete it only once per person with POTS or carer. If you have already completed it, there is no need to do so again.
CLICK HERE TO COMPLETE THE EconoPOTS SURVEY
This survey was originally created to inform The Australian POTS Foundation’s submission to the Parliamentary Inquiry into COVID-19. It continues to collect valuable information from individuals in the community affected by Long COVID or Long Vaccine.
You do not need to have a diagnosis of POTS to participate. Your responses will help us better understand the experiences of those living with these conditions and guide our advocacy efforts to improve healthcare policies and support.
To access this survey:
Please complete this survey only once.
Many children and adolescents with POTS experience significant school absenteeism or interruption due to debilitating symptoms. However, in Australia there is not data collected on how many children are missing school due to chronic illness—or specifically due to POTS. This gap in data makes it difficult to advocate for the necessary educational support and policy changes.
Our Missing School Survey aims to capture the real experiences of students and families to better understand the challenges they face. This survey can be completed by adults on behalf of a minor who is of school age, as well as by young adults who are in (or should be in) high school or university (up to approximately age 25). It is important to collect data from both perspectives, and we encourage those who are school-age and not missing school due to POTS to also complete the survey. This input will help us compare experiences and better illustrate the impact of POTS on education.
By gathering this data, we hope to advocate for policy changes, improved school accommodations, and greater support systems to ensure every student has access to the education they deserve.
CLICK HERE to access this survey