hEDStogether

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hEDStogether

hEDStogether

@hEDStogether

Putting our #hEDStogether to co-create research with academics, health professionals, third sector, family & people with #HSD #EDS #POTS (& related conditions)

Katılım Kasım 2019
159 Takip Edilen3.3K Takipçiler
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Dr Gemma Pearce
Dr Gemma Pearce@GemmaSPearce·
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
Ben Whybrow@BWhybrowPhysio

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…

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hEDStogether@hEDStogether·
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
Coventry University Research and Innovation@CovUniResearch

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 🚀👏

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Dr Sarah E. Bennett
Dr Sarah E. Bennett@DrSarahBennett·
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!!🌟
Dr Gemma Pearce@GemmaSPearce

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…

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Dr Gemma Pearce
Dr Gemma Pearce@GemmaSPearce·
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…
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Dr Gemma Pearce
Dr Gemma Pearce@GemmaSPearce·
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…
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Anna Higo
Anna Higo@higo_anna·
Check this out 😃Please share the survey 🙏🏻 app.onlinesurveys.jisc.ac.uk/s/coventry/the… @ShoulderGeek1 @theshoulderdoc @thecsp @chrissyholmes15 @DrEReinhold @BendyBrain @JGjanegreenMBE
hEDStogether@hEDStogether

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…

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hEDStogether
hEDStogether@hEDStogether·
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…
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limbostate
limbostate@limbostate1·
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
Dr Gemma Pearce@GemmaSPearce

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…

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Stickman Communications ltd
Stickman Communications ltd@stickmancrips·
@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.
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Emma Reinhold
Emma Reinhold@DrEReinhold·
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!
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Anna Higo
Anna Higo@higo_anna·
Are you hEDS/HSD experiencing shoulder symptoms and living in the UK? Please take our 20minute survey exploring experiences and perceptions to the use of specialist orthotic clothing known as Dynamic Elastomeric Fabric Orthoses (DEFO). Please share and RT app.onlinesurveys.jisc.ac.uk/s/coventry/the…
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Keşfet

@higo_anna @BWhybrowPhysio @TheEDSociety @EdsukNikki @HMSACharity @behnam_liaghat @GemmaSPearce @SallyPezaro