The Australian Pots Foundation LTDRegistered

The Australian POTS Foundation (APF) is a volunteerrun, consumerled organisation and the only charitable peak body dedicated to supporting Australians affected by Postural Orthostatic Tachycardia Syndrome (POTS). About 90% of those diagnosed are women of childbearing age, and many experience a profoundly low quality of life, facing symptoms like severe dizziness, debilitating fatigue, and difficulty performing daily activities. We focus on education, advocacy, community support, and research to improve understanding, treatment, and care. We engaged consumers in diverse national research projects, ensuring that their lived experiences guide our direction. We formalised consumer engagement guidelines and established a Lived Experience committee for meaningful input. Through social media, a comprehensive website, and community outreach, we broaden our network, share vital information, and empower our community with resources. We committed to funding a $30,000 open grant call and a PhD topup scholarship for innovative, consumerinformed POTS research. We introduced a new educational initiative enabling a resident physician to attend the American Autonomic Society Physician Course, enhancing clinical expertise. We expanded access to reducedcost, sponsored products and advocated for PBSlisted medications and specialised services. Working with likeminded groups, we secured the inclusion of POTS in Clinical Guidelines, underscoring the need for proper recognition and care pathways. We hosted a successful 2024 conference and a webinar series featuring expert speakers, advancing clinician development, raising awareness, and supporting those affected. Throughout, the consumer voice remained central, shaping POTS care and research. As we look ahead, the Australian POTS Foundation remains steadfast in our commitment to advancing education, deepening research involvement, and supporting our community.