Kay Julier (she/her)

Scientist; feminist; interested in everything! Special interest in healthcare, Ehlers-Danlos syndromes and hypermobility. All views are my own.

[Kay Julier (she/her) @KayJulier]

A very well-deserved recognition of your passion and perseverance! Congratulations 👏

[Dervil Dockrell @dervidock]

Delighted and honoured to have received the responsible innovation and engagement award at the research impact festival today for our work with EDS/HSD patients ⁦@ehlersdanlosuk⁩ ⁦@TheEDSociety⁩ ⁦@EdinUni_IGC⁩ ⁦@GrowingYourIdea⁩

[Kay Julier (she/her) @KayJulier]

Really great to see this come to fruition!

[Annabelles Challenge Vascular EDS Charity @AJsChallenge]

Join the team! An excellent PhD opportunity for every Physiologist or Sport Scientist, who wishes to give a lifeline to people with #vascularEDS by designing a lifestyle intervention that will support their treatment plan!

Full information: https://t.co/BmXU9U9V2S

[Dervil Dockrell @dervidock]

Thank you @PaulMcLennan7 for speaking to us at our exhibition @ScotParl today and for giving us support with trying to get a care pathway for #hEDS #HSD #EDS patients in Scotland .We appreciate it.
#TranslatingResearchIntoChange

[Kay Julier (she/her) @KayJulier]

@ehlersdanlosuk Big congratulations to all the runners. What a fantastic achievement and for a great cause👏👏

[Kay Julier (she/her) @KayJulier]

Being a trustee is a great way to use and further develop your skills and make a major contribution to a charity. And I can highly recommend the @ehlersdanlosuk Board - highly competent, supportive and generally lovely! #trustees #VolunteerWork

[Charlotte Williams (also on Bluesky) @CEmWilliams]

Our Board @ehlersdanlosuk has vacancies coming up, including Treasurer. Fancy giving some of your time to support people living with disabilities? Please apply! It’s a lovely team & strong Board (even if I do say so myself 😊). https://t.co/IAzkJVmBrO…
Please share THANK YOU 🙏

[Kay Julier (she/her) @KayJulier]

@ehlersdanlosuk Merry Christmas and Happy New Year to you all. Enjoy your very well-earned rest!

[Kay Julier (she/her) @KayJulier]

Fantastic to see this @ehlersdanlosuk. Well done!

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Tuesday 21 November was a momentous day for @ehlersdanlosuk. In the early afternoon, we held a briefing with MPs in Westminster on the lack of NHS services for people with hypermobile Ehlers-Danlos syndrome or hypermobility syndrome disorder in England. https://t.co/2dayck9BIN

[Ehlers-Danlos Support UK @ehlersdanlosuk]

168 new signatures in less than 24 hours, please keep sharing and signing! Can we get to 20,000 by Saturday? #EnoughIsEnough Please RT https://t.co/maMVxTXUoG

#EhlersDanlosSyndrome #HypermobileEDS #HypermobilitySpectrumDisorder

[Kay Julier (she/her) @KayJulier]

Credit to @ScillyWildlife and @ScillyBirds for what looks like wheelchair space in one of their hides on St Mary’s #islesofscillywildlife #islesofscillybirds

[Kay Julier (she/her) @KayJulier]

@EdsukNikki Thank you Nikki.

[Kay Julier (she/her) @KayJulier]

Reflecting on a whirlwind last day yesterday at @ehlersdanlosuk made easier knowing the brilliant team of staff, trustees volunteers & consultants will build on what we have achieved together. A huge 🙏 to everyone who has supported me.

[Kay Julier (she/her) @KayJulier]

@AJsChallenge @ehlersdanlosuk Thank you so much for making the journey yesterday and for my gorgeous gifts. It was good to see you both, as always. It has been great working with you and I wish @AJsChallenge all the best for the future.

[Beki Babb @PhDigest_Beki]

Still needing participants for this study! If you have gastroparesis, are 18+, and have some or all of your nutrition orally, please take part! Thank you!

Link is: https://t.co/V3o3KOXRXP

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Researchers are looking for #autistic participants who have hypermobile Ehlers-Danlos syndrome (hEDS) for a new study. If you have been diagnosed with #hEDS and #autism spectrum disorder, without intellectual disability, and are over 18, contact [email protected]

[Kay Julier (she/her) @KayJulier]

Great to see this Sarah. Thank you for being a fantastic #Hypermobility and #EhlersDanlosSyndromes ambassador. @ehlersdanlosuk

[Dr Sarah E. Bennett @DrSarahBennett]

Excited to present today on behalf of @BristolUni at #FallingWalls @Cambridge_Uni! 🎉✨ 'Breaking the wall of... Joint #Hypermobility' 🦓 😁 #EhlersDanlosSyndrome #HEDS #HSD #whywedoresearch

[Prof Jane Simmonds @jvsimmonds01]

If you have a child aged 6-12 years with symptomatic hypermobility please consider participation in this study. We want to understand the symptoms and impact better so that we can develop our assessment Spider tool for younger children. @HMSACharity @TheEDSociety @ehlersdanlosuk

[Kay Julier (she/her) @KayJulier]

So true. One of the best coaching questions I’ve ever been asked was ‘what would happen if you did nothing?’ when considering a tricky situation. It was something I’d never considered.

[Helen Bevan @HelenBevan]

Often as leaders, we get valued for taking action, rather than for thinking about things. It leads to short-term perspectives rather than the strategic, big-picture, long-term thinking we need for complex problems. Making time for magical thinking, especially collective thinking, really can change the world: https://t.co/2dt19UkRK9 By @peoplefirstps. Graphic: @grantdraws

[Kay Julier (she/her) @KayJulier]

Thank you for volunteering with @ehlersdanlosuk Brian!
We couldn’t do what we do without our amazing volunteers. #VolunteersWeek2023

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Meet Brian, your new volunteer Coordinator for our LGBTQ+ support group.

Online LGBTQ+ support group meeting
Sat, June 10, 2:00pm – 3:30pm
Find the Zoom link to join here: https://t.co/XZ7ePOIBCb #PrideMonth #VolunteersWeek #EhlersDanlosSyndrome

[Ehlers-Danlos Support UK @ehlersdanlosuk]

Meet Brian, your new volunteer Coordinator for our LGBTQ+ support group.

Online LGBTQ+ support group meeting
Sat, June 10, 2:00pm – 3:30pm
Find the Zoom link to join here: https://t.co/XZ7ePOIBCb #PrideMonth #VolunteersWeek #EhlersDanlosSyndrome

[Kay Julier (she/her) @KayJulier]

@Popgoes6 So sorry to read what you’re going through Kane. As an ex-colleague, I disagree with your summary of yourself. I found you easy to work with, focused, kind and solution-orientated. All sought-after attributes.