hEDStogether @hEDStogether
Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions) hEDStogether.com Joined November 2019-
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We have some very exciting news! We have launched a new research project! Are you #pregnant or #Postnatal and living with #hypermobility in the UK? Or are you UK-based #physio treating hypermobility during or after pregnancy? Find out more here 🙂 ew23aafc780.myportfolio.com/work
Helen has lots of fabulous updates about her PhD research supporting people with POTS in this blog hedstogether.com/dr-helen-eftek… You can access a full version of her completed PhD thesis free online. See Helen's new publications. 🥳 More publications to come so watch this space!
The fantastic @higo_anna in the top 5 most downloaded 2025 Clinical Communication podcast episodes with @BWhybrowPhysio 🥳 Brilliant episode and highly recommend a listen 😊 @hEDStogether
3rd. Is @higo_anna on discussing hypermobility spectrum disorder & hEDS with patients. I’ve literally had people tell me they’ve diagnosed HDS/hEDS from this episode. Shout out to @physiojack for helping spread this. open.spotify.com/episode/0ob8nB…
I loved doing this and spreading the symptomatic hypermobile word @TheEDSociety @EdsukNikki @HMSACharity @behnam_liaghat @hEDStogether
Right then, What were the Top 5 most downloaded podcast episodes of Clinical Communication from 2025? Let’s see…
NEW! Free fully accessible paper showing the results of running the rehabilitation intervention with and for people with POTS #posturalorthostatictachycardiasyndrome #feasibility #RCT bmjopen.bmj.com/content/15/2/e…
Fabulous to see @GemmaSPearce @SallyPezaro & @ndholliday being celebrated as part of #WomenInScienceDay We have lots of fabulous women working in #STEM across #hEDStogether projects hedstogether.com/our-team/ @higo_anna @EftekhariHelen @SabeehaMalek @laurenmpurdy @DrEReinhold
This #WomenInScienceDay, we’re applauding our amazing women researchers in #STEM! 👩🔬✨ We're continually inspired by how they are breaking barriers. Past & present, Coventry's women in science shine 🌟 Keep inspiring us - we couldn't be prouder to celebrate you all 🚀👏
⭐️💻 Webinar tomorrow evening - Ask the Experts 💻⭐️ Tomorrow evening the @HMSACharity are hosting a free webinar with #PoTS expert Nurse @EftekhariHelen and expert Occupational Therapist @JBOccyTherapy. Please see further details & how to sign up here: hypermobility.org/event-details/…
Fabulous new open access work by @EftekhariHelen @GemmaSPearce @sophie_stan2 and Kate Seers in partnership with @hEDStogether and @UKPoTS 🎉🥳The first study to provide an in-depth understanding of the experiences of both people with #POTS and health professionals!!🌟
New publication! Free open access to all 😃 POTS is starting to get better recognition now it is associated with Long COVID but there is still not appropriate or consistent healthcare provided system wide. Read more here doi.org/10.1016/j.ijnu…
New publication! Free open access to all 😃 POTS is starting to get better recognition now it is associated with Long COVID but there is still not appropriate or consistent healthcare provided system wide. Read more here doi.org/10.1016/j.ijnu…
Our survey on hypermobility and the shoulder is closing soon. This is a final push so please do take part and/or share! :) Participants need to be 18+ in UK with a hypermobile diagnosis like hEDS, HSD, EDS type III, EDS-HT, JHS. Find out more here app.onlinesurveys.jisc.ac.uk/s/coventry/the…
Our fabulous @higo_anna was interviewed for the telegraph recently about hypermobility. telegraph.co.uk/health-fitness…
Check this out 😃Please share the survey 🙏🏻 app.onlinesurveys.jisc.ac.uk/s/coventry/the… @ShoulderGeek1 @theshoulderdoc @thecsp @chrissyholmes15 @DrEReinhold @BendyBrain @JGjanegreenMBE
Check out Anna Higo's blog with some fantastic news! @higo_anna In the blog she summarises a recent publication on shoulder treatments for hypermobility & launches a NEW SURVEY! Have a look, share with others and take part 😁❤ THANK YOU 🙏 hedstogether.com/annas-blog-abo…
Check out Anna Higo's blog with some fantastic news! @higo_anna In the blog she summarises a recent publication on shoulder treatments for hypermobility & launches a NEW SURVEY! Have a look, share with others and take part 😁❤ THANK YOU 🙏 hedstogether.com/annas-blog-abo…
There's this new study which is for EDS and HSD with shoulders. My daughter's shoulder is always on the move😆 If anyone wants to do it @SEDSConnective @TheEDSociety @Dysautonomia @CrohnsColitisUK
Do you have hypermobile #EhlersDanlosSyndrome or a similar diagnosis? Do you have issues with your shoulder? Are you an adult living in the UK? Please complete this survey to let us know your experience & if you might want shoulder support or not 😊 app.onlinesurveys.jisc.ac.uk/s/coventry/the…
@stickmancrips @limbostate1 @higo_anna @hEDStogether @behnam_liaghat @ProfSheaPalmer @jason_tallis @DrSarahBennett @SabeehaMalek @ehlersdanlosuk @TheEDSociety 👍 it also includes other older criteria versions like EDS hypermobility type (HT) and EDS type III 😊
@limbostate1 @GemmaSPearce @higo_anna @hEDStogether @behnam_liaghat @ProfSheaPalmer @jason_tallis @DrSarahBennett @SabeehaMalek @ehlersdanlosuk @TheEDSociety There are loads of possible diagnostic terms - listing them all would take up many characters, and probably still not cover all of them! - symptomatic hypermobility, jhs, hsd, bjhs, possible connective tissue disorder, heritable disorder of connective tissue……etc etc.
EDS UK invites UK-based GPs and GP trainees to a FREE educational event in London this November. The event will focus on how to spot hypermobility-related conditions in Primary care: ehlers-danlos.org/news/a-free-ed… #MedTwitter #MedEd #GPs #Hypermobility
Do you have hypermobile #EhlersDanlosSyndrome or a similar diagnosis? Do you have issues with your shoulder? Are you an adult living in the UK? Please complete this survey to let us know your experience & if you might want shoulder support or not 😊 app.onlinesurveys.jisc.ac.uk/s/coventry/the…
eventbrite.com/e/ehlers-danlo… Announcing the most exciting opportunity for GPs this year! [Drumroll] @ehlersdanlosuk are holding an afternoon event for FREE (thanks to a generous donor). I'm chairing alongside an amazing faculty. Workshop-based practical learning by GPs for GPs!
Jeannie Di Bon @jdibon
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The Ehlers-Danlos Soc... @TheEDSociety
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Alissa Zingman MD MPH... @DocZing
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Candace D. @DiaryofaSickGrl
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Jeffrey Lubell (EDS, ... @JeffLubell_C19
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🌱寒冷地のサ�... @SANYUNCORE
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Moss Is NOT Weight Re... @Sneakunhealthy
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Danízar Vásquez Car... @CarlonDani85916
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Ashley @Ashley756825685
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𝚉𝚊𝚌𝚑𝚊�... @zmcgeary
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Hypermobility MD: Dr ... @BluesteinLinda
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S Blitshteyn MD, FAAN... @dysclinic
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The Ehlers-Danlos Soc... @TheEDSociety
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OhTWIST.bsky.social n... @H2OhTwist
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Ehlers-Danlos Support... @ehlersdanlosuk
18K Followers 10K Following *This account is no longer active. See pinned post for how to find EDS UK and access support.*
Alissa Zingman MD MPH... @DocZing
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BendyBrain: Dr Jessic... @BendyBrain
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Stickman Communicatio... @stickmancrips
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Emma Reinhold @DrEReinhold
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Dr Asad Khan FRCP FRA... @doctorasadkhan
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Dr Erica McAlister @flygirlNHM
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Cheryl Iny Harris, MP... @CherylharrisRD
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Chartered Society of ... @thecsp
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louise grant @louisefgrant
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BANCC💙 @bancccouncil
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Prof Omid Khaiyat M.D... @Omid_HopeUni
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Jade Barclay 😷🌈... @JadeBarclay
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Sarah Cohen Solomon, ... @TheBendyPedMD
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Maggie Buckley @MaggieBuckley1
610 Followers 714 Following I volunteer with Pain and EDS support orgs. At Counter Social I am @MaggieBuckley1 dm me over there.
Dr Amanda Moore @AmandaMoore_PhD
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Patient-Led Research ... @patientled
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