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
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
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
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 🙏
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
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.
@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.
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
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]
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
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.
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
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
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
@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.