@UKPoTS profile picture
PoTS UK @UKPoTS

A charity passionate about supporting those with Postural Tachycardia Syndrome; raising funds to provide information, education, research, awareness & advocacy.

Joined May 2014
  • Tweets 4,857
  • Following 3,489
  • Followers 7,280
974 Photos and videos
Pinned Tweet
PoTS UK@UKPoTS
Apr 6
1/4 IT'S HERE 🎉 POTS UK's Educational Video Series is officially LIVE! After months behind the scenes, we're so excited to bring you 13 bite-sized videos designed to support, empower, and guide you. 🎬 Today’s video: potsuk.org/managingpots/educ… #PoTS #MECFS #EDS #LongCovid
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1/4 Have you downloaded your PoTS Passport yet? At PoTS UK, we know that many people living with #PoTS can face challenges in healthcare settings due to limited awareness and understanding of the condition and its impact on everyday life.
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3/4 Download the PoTS Passport here: potsuk.org/managingpots/pots… We'd love to hear your feedback. Whether you're a person living with PoTS, a family member, carer or healthcare professional, your views are important to us.

PoTS Passport - PoTS UK

At PoTS UK, we recognise that many people living with PoTS experience challenges within healthcare settings because of limited awareness or understanding of the condition and how it affects daily...

potsuk.org
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4/4 Is there anything missing? Is there something that could be improved? What has your experience been of using the Passport? Please share your thoughts by completing our short survey: surveymonkey.com/r/9PD7YXJ Your feedback will help us continue to improve!

PoTS Passport - Feedback

Take this survey powered by surveymonkey.com. Create your own surveys for free.

surveymonkey.com
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💻Webinar #MCAS Dr Bethan Myers is running a webinar for healthcare professionals, clinics & clinical directors: ⭐️Mast Cell Disorders in Practice: MCAS, HαT & Mastocytosis⭐️ 18 June 12.30-13.30 GMT Info: events.teams.microsoft.com/e… #MCASAwareness #MastCellDiseaseAwarenessMonth
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1/3 International Mast Cell Disease Awareness Month is here! This June, we’re joining the conversation to help shine a light on Mast Cell Activation Syndrome (#MCAS) & other mast cell diseases. These complex conditions can affect multiple body systems, are often misunderstood...
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2/3 ...and can be challenging to diagnose. Together, we can help more people recognise the signs, access appropriate care, and feel less alone. Find out why International Mast Cell Disease Awareness Month matters: mastcellaction.org/why-inter…

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3/3 We’re proud to support the work of @MastCellAction and stand alongside the mast cell disease community this June. 💜 #MastCellDiseaseAwarenessMonth
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PoTS UK retweeted
Lauren Abby Author@IamLaurenAbby
Jun 1
Wearing my @UKPoTS land yard in Cheddar Gorge yesterday. Raising awareness of the debilitating chronic illness. 💜💛🩷
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1/4 Good luck to our incredible PoTS UK runners tomorrow! We want to wish the very best of luck to Steve, Liv, Louise, Scott & Jess, who are taking on the Great Manchester Run Half Marathon, and to Tom, who is running the Green Park Reading 10K & Family Runs support of PoTS UK.
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3/4 Jess: justgiving.com/page/jessica-… Steve: ajbellgreatmanchesterrun2026… Scott: justgiving.com/page/scott-wh… Louise: justgiving.com/page/louise-w… Liv: justgiving.com/page/liv-farr… Tom: justgiving.com/page/toms10kf… If you live nearby, please go along and cheer them on!

Jessica's fundraiser for PoTS UK

Help Jessica Naughton raise money to support PoTS UK

justgiving.com
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4/4 Two of our lovely PoTS UK volunteers will also be there supporting our Manchester runners and would love some extra encouragement from the community. We’ll be cheering every mile from afar, good luck everyone, you’ve got this! #FundraisingHeroes #RunningForPoTS
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1/6 PoTS UK Masterclass 2026: Catch-Up Content Now Available! Did your healthcare professional miss our #PoTS Masterclass 2026 – “Back to Basics and New Insights” in May? The recordings are now available to purchase. Purchase here: potsuk.org/product/pots-uk-m… #MedTwitter #TeamGP

PoTS Masterclass 2026 - PoTS UK

In May PoTS UK hosted a Masterclass for healthcare professionals, “Back to Basics and New Insights”. We are now offering the opportunity for healthcare professionals in both primary and secondary...

potsuk.org
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5/6 Greater awareness and understanding of PoTS can make a real difference to the patient experience. Recordings will be emailed following purchase. As a small charity, we kindly ask that recordings and resources are not shared.
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6/6 By purchasing these materials, you are helping us to continue our work and support future educational projects for the PoTS community. Thank you for your understanding and support. Please share with your healthcare professionals and help us improve understanding of PoTS.
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1/2 It was great to hear PoTS UK volunteer Maisie on @bbcsomerset radio this morning, sharing how the hot weather affects her #PoTS 🔥 Heat can make symptoms more challenging, with Maisie sharing tips on what helps her 💜 #Heatwave #InvisibleIllness #ChronicIllness
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2/2 Please see our website for more information about #PoTS & temperature regulation, and for tips on what may help: potsuk.org/managingpots/temp…

Temperature Regulation - PoTS UK

People with PoTS often have problems with temperature regulation. This is because the autonomic nervous system, which is abnormal in PoTS, also controls our body temperature. Some people struggle to...

potsuk.org
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