The Australian National POTS Patient Registry will be the first national adult POTS registry in the world, and the first of its kind in the southern hemisphere. This long-term, national platform will track the lived experience of Australians diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) to create the evidence base needed to improve diagnosis, treatment, ...
The Australian POTS Foundation
The Australian National POTS Registry
GOAL
$300,000
Australia > National / Multi-state > Metro and Regional
Field of Interest
- Education/training and employment
- Health/wellbeing and medical research
Target Population
- People with a disability, illness or disease
- Women and girls
The Australian POTS Foundation
The Australian POTS Foundation (APF) is the only organisation in Australia solely dedicated to Postural Orthostatic Tachycardia Syndrome (POTS) and associated autonomic disorders.
We are a volunteer- and patient-led organisation, operating nationally since 2021, and hold full DGR1 charitable status. Our mission is to support Australian-led research, educate health professionals, and provide evidence-based resources, empowerment, and connection for our community.
POTS is a complex, often disabling autonomic condition that predominantly affects young women. It remains widely misunderstood, with many Australians facing delayed diagnoses, limited care pathways, and systemic barriers to support.
Our work is structured around four strategic pillars:
1. Advancing Australian-led Research
2. Ensuring Equitable Access to Care
3. Educating and Empowering Through Evidence
4. Strengthening Community and Support Networks
We deliver RACGP-accredited, community-informed education to healthcare professionals across the country and maintain a digital reach of over 250,000 Australians through our online resources, events, and programs.
Our recent impact includes:
• Successfully securing the adoption of an International Classification of Disease diagnostic code for POTS in Australia
• Partnering with leading universities to establish the first Australian POTS Research Registry
• Providing critical tools and support to improve quality of life for those affected
APF is the trusted voice for POTS in Australia and we are working to ensure every Australian with POTS is seen, supported, and able to access equitable healthcare.
Project Summary
The Australian National POTS Patient Registry will be the first national adult POTS registry in the world, and the first of its kind in the southern hemisphere. This long-term, national platform will track the lived experience of Australians diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) to create the evidence base needed to improve diagnosis, treatment, and recognition of this condition across Australia.
Over a minimum 10-year period, the Registry will collect real-world data on diagnostic delay, functional capacity, quality of life, co-existing conditions, and health system impact. Its primary aim is to shorten the time to diagnosis, which currently averages several years—and is often significantly longer for women. This data will inform clinical guidelines, education for healthcare professionals, health economics research, and future Australian-led treatment studies.
POTS is a complex and often disabling form of autonomic dysfunction affecting blood flow and heart rate. It commonly presents with symptoms such as dizziness, rapid heart rate, brain fog, and fatigue. These symptoms can severely limit a person’s ability to work, study, or engage in everyday activities—yet many are misdiagnosed or dismissed due to a lack of awareness and clinical guidance.
Currently, no national data exists to guide care for POTS in Australia. The Registry will fill this gap—driving earlier diagnosis, more consistent care pathways, and a stronger national response.
By supporting the Registry, funders will help drive lasting change in how POTS is recognised and managed across Australia.
Project Outcomes
We are working to drive meaningful, measurable change in how POTS is diagnosed, understood, and managed in Australia.
Our primary goal is to reduce the time it takes for people with POTS to receive a diagnosis—particularly women, who experience the longest delays. Through large-scale, longitudinal data collection, the Registry will inform the development of clinical guidelines, medical education, and policy reform that lead to earlier recognition and more consistent standards of care.
Success will be measured through:
• A measurable reduction in diagnostic delay over the life of the project.
• Health professional engagement, including incorporation of Registry insights into clinical training and practice.
• Policy uptake, such as inclusion of POTS in government frameworks, chronic illness strategies, and health funding models.
• Uptake of the Registry as a reference source by researchers, clinicians, and health departments.
• Increased participation in POTS-focused clinical trials and Australian-led research.
• Positive trends in reported quality of life and care access among Registry participants.
Ultimately, we will know we’ve achieved our goal when Australians with POTS are no longer waiting years for answers—and when the health system is better equipped to recognise and respond to this condition with the urgency and evidence it deserves.
Budget Breakdown
TOTAL BUDGET: $600,000
FUNDING
| Funding source | Amount |
|---|---|
| The Australian POTS Foundation | $300,000 |
| Funding gap | $300,000 |
EXPENSES
| Expense item | Amount |
|---|---|
| REDCap Development & Hosting Custom platform setup, secure hosting, technical maintenance | $130,000 |
| Project Coordination; Over 3 years, Part-time coordinator (0.6–0.8 FTE), project admin, ethics, stakeholder liaison | $200,000 |
| Research & Data Analysis; Data management, statistical analysis, report preparation | $80,000 |
| Site Training & Setup; Training materials, onboarding, remote site support | $80,000 |
| Compliance & Ethics; Ethics approvals, data governance, updates | $15,000 |
| Community & Stakeholder Engagement; Participant onboarding, co-design workshops, resources | $35,000 |
| Knowledge Translation & Dissemination; Publications, conference presentations, webinars, summaries | $25,000 |
| Administrative Overheads & Contingency; Insurance, basic software, legal, general admin | $35,000 |
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