Australian POTS Foundation

Australian POTS Foundation│Non Profit Organisation. We strive to make a brighter future for those with postural orhtostatic tachycardia syndrome.

[Australian POTS Foundation @AustralianPots]

*Gemma Wilson (and co-authors) (University of Adelaide / SAHMRI) - a cross-sectional analysis of 303 POTS patients in MDT care over 12 months, finding that overall autonomic symptom burden improved, driven by improvement in orthostatic intolerance. 9/9

[Australian POTS Foundation @AustralianPots]

The poster competition at #Converge2026 deserves its own moment. 💙

8 researchers. 9 posters.

9 questions this field has been asking - and people who showed up with evidence, rigour, & genuine commitment to moving the dial for people living with #POTS & invisible illness. 1/9

[Australian POTS Foundation @AustralianPots]

*Soo Liang Ooi and team, led by A/Prof Sok Cheon Pak (Charles Sturt University) - the HSOP-POTS study protocol: investigating whether Hokkaido Scallop Oil Plasmalogen supplementation can improve cognitive function in children and adolescents with POTS. 8/9

[Australian POTS Foundation @AustralianPots]

Dr Alexis Cutchins opened with a 2002 study.

94 POTS patients compared with COPD & heart failure patients - 3 conditions not often compared.

Physical disability scores were equivalent.

"POTS is not all in your head, and it's not, it's not an emotionally driven problem"

[Australian POTS Foundation @AustralianPots]

"Patients are experts in their own experience."

A powerful reminder from Emma-Louise at #Converge2026 today.

When we listen with curiosity instead of assumptions, we create better healthcare, better research and better outcomes.

Healthcare needs to be patient-informed.

[Australian POTS Foundation @AustralianPots]

Big ideas. Cutting-edge research. Lived experience. Hope.
#Converge2026 has officially begun, bringing together some of the world's leading voices in POTS, Long COVID, ME/CFS, dysautonomia and complex chronic illness.

We'll be sharing highlights and key takeaways.
Stay tuned.

[PoTS UK @UKPoTS]

As October is Dysautonomia Awareness Month we make sure we raise awareness of #PoTS every day throughout the month: 31-days of jam-packed ways to get involved!

We will be:
✨Sharing daily facts
✨Hosting special webinars and events
✨Sharing powerful patient quotes & stories
✨Lighting up buildings across the UK in purple
✨Raising awareness and vital funds to support our work

👉Follow along, get involved, and help us spread the word. Together, we can build understanding, support those living with PoTS, and push for the recognition this condition deserves!

💜Let’s make PoTS visible this October.
📲 Keep an eye on this page for updates and ways you can take part!

#PoTSAwarenessMonth #DysautonomiaAwarenessMonth #LivingWithPoTS #PoTSFacts
#LightUpForPoTS

[Marie-Claire Seeley @mcseeley]

New 🇦🇺 data from our POTS registry: teens & adults experience POTS differently.
- Teens: worse orthostatic symptoms
- Adults: more gut & bladder issues
Both report = poor QoL.
Proud to author this work.
👉 https://t.co/v9vYD38GYA
@ADARC_UoA @DH_Lau @sahmriAU @AustralianPots

[Australian POTS Foundation @AustralianPots]

🚨 New research supported by @AustralianPots published @EurJCardNurs: Women with #POTS report worse autonomic symptoms than men, despite equal anxiety & healthcare use.
Yet face longer diagnostic delays.
Led by @mcseeley @CelineGallaghe2 @DH_Lau
🔗https://t.co/AHM5r8jwcR

[Australian POTS Foundation @AustralianPots]

📣 The APF was proud to advocate at Parliament House today with @MissingSchoolAU, championing kids with chronic illness who are missing from school.
🙏 @MeganGilmour & the team for driving this conversation! @mcseeley @CelineGallaghe2
https://t.co/XsjyJU1XzS

[Scientific Reports @SciReports]

Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with postural orthostatic tachycardia syndrome and cognitive dysfunction
https://t.co/clI82gL0t6

[Australian POTS Foundation @AustralianPots]

More research from @Stanford_Neuro showing the burden of #POTS and #autonomic disorders after #COVID

[Marie-Claire Seeley @mcseeley]

New from @Stanford_Neuro Among 491 individuals with no prior history of #autonomic disorders:
🔹 44% developed an autonomic disorder after COVID-19
🔹 75% of these had new onset POTS
https://t.co/Xfye3dmBgt

[Australian POTS Foundation @AustralianPots]

📢 New Australian research on #POTS! 🇦🇺
Adelaide researchers have shown cerebral hypoperfusion in POTS is common.
These findings have major implications for clinical care and future research.

Read more: https://t.co/g0uwLo2LO7

@CelineGallaghe2 @DH_Lau @ADARC_UoA @mcseeley

[Marie-Claire Seeley @mcseeley]

Thrilled to share our published study on cerebral hypoperfusion in #POTS! Findings highlight key implications for clinical management and future research into autonomic disorders.

Read more: https://t.co/RAfR4kwXWj

@sahmriAU @CelineGallaghe2 @DH_Lau @ADARC_UoA #Dysautonomia

[Australian POTS Foundation @AustralianPots]

Big news! 🇦🇺 officially confirms a unique ICD code for #POTS – a huge win for recognition & health policy reform.

🙏to @mcseeley & @celinegallagher for tireless advocacy & @Dysautonomia & Dr Jeff Boris for paving the way in the US.
https://t.co/h8AOyczI3b

#POTS #Dysautonomia