Community Engagement

Lived experience engagement is about making sure the voices of people living with POTS and their carers are heard and valued in research, healthcare, and policy decisions. Your lived experience is essential for helping researchers and health organisations understand what really matters to the POTS community and improving outcomes. By sharing insights, our community can make a real difference in shaping research priorities, improving resources, and ensuring health services meet the needs of people with POTS.

Lived Experience Advisory Network

The Lived Experience Advisory Network (LEAN) is a standing committee of the Australian POTS Foundation. It brings together people with lived experience of POTS (patients, carers, and professionals) to ensure that real-world perspectives guide our work and the work of researchers, clinicians, and policy-makers.

LEAN members provide insight and feedback on:

  • Research priorities and grant proposals
  • Health policy submissions and advocacy efforts
  • Resources, surveys, and educational materials

Their input helps ensure that decisions reflect the needs and realities of the POTS community.

We welcome expressions of interest from:

  • People aged 16+ living with POTS
  • Carers and family members

Applications are accepted on a rolling basis as positions become available.

Follow us on social media for updates on when we’re accepting new members.

         

Catherine

Vic
I wanted to support the APF because their coverage in the media was pivotal in my seeking a POTS diagnosis in the first instance, and thereafter the APF has provided valuable information about medication and management strategies. I am here to support the APF in any small way I can.

Claudia

NSW
My diagnosis is relatively recent (although symptoms have been present for ages) and the POTS Foundation was very helpful when I was trying to understand POTS and find practical solutions. I've also found the webinars very useful, and really appreciate the advocacy work they do on our behalf.

Disha

Vic
I was motivated to become a LEAN member because of my awareness of the gaps in healthcare for people with chronic illnesses, both from my lived experience and as a healthcare professional. I have a strong desire to contribute to driving change on both individual and systemic levels.

Ilona

Tas
I am studying medicine at university while navigating life with POTS, so I have knowledge of the condition from both the patient and doctor side. Living in Tasmania, I've noticed a widespread lack of awareness and understanding of the condition and this is something I would like to help change.

Jess

WA
I want to improve awareness and understanding of POTS and clarify avenues for people to receive the diagnosis and treatment/support they need.

Matthew

Vic
A desire to improve people's lives is what motivated me to apply to become a member of the LEAN. I have faced horrid medical gaslighting at the hands of those in the hospital system who were supposed to help me, and so I wish to turn this betrayal into something positive. I am a passionate youth advocate in my local community, and I want to use and develop my skills and experience in order to try to lessen our suffering.

Meg

SA
I was motivated to become a member of LEAN because I truly want to positively contribute to the POTS community by being a strong advocate for more awareness, understanding and education regarding POTS. I am genuinely passionate about progressive research and developing supports. This is a debilitating condition which is often widely misunderstood and dismissed. I want to make it more visible.

Nina

SA
My biggest hope is that my experience as a transfemme person living with POTS can be useful for research and care. With POTS showing sex-related differences, I believe that trans people can provide interesting observations.

Sandra

Vic
My personal journey to diagnosis was long and difficult and upon learning that this can often be the case, I am motivated to contribute to improved time-to-diagnosis for others. Contributing to research through lived experience offers a unique perspective that supports improved knowledge and outcomes.
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