"Without lived experience health systems miss the why and fail on the how" President and CEO The Ehlers-Danlos Society, Professor Lara Bloom is at the World Health Assembly today. "I’m feeling very grateful to IAPO for allowing me to be alongside them this week in my role as Vice Chair of the

For some, EDS and HSD can often be invisible conditions unless they have a need for a splint, support or wheelchair for example. This can often be difficult for people to understand, how a condition can fluctuate so much that one day you appear 'fine' and another day you cannot

Breaking news - Norris Lab Finds hEDS Gene: Kallikrein While only a preprint yet, this pushes the science forward for many with #hEDS buff.ly/4cj40El #EDS #hEDS #EhlersDanlosSyndrome #NEISvoid #Science #Research #Medicine #Genetics #MedEd #Doctors #Zebras

Hypermobile Ehlers-Danlos syndrome (hEDS) is a connective tissue disorder whose genetic cause has been difficult to identify. Researchers at the Norris Lab conducted a study looking for genetic links to hEDS by sequencing the DNA of families and individuals with hEDS. They

Call for submissions for Your Life Your Story 2nd book. Sam Upton Jon Needham @jamie_crabb nlcbf Catch22 ECLCM Article 39

EDS & Psychological Medical Trauma: An Introduction buff.ly/3Pz1dyr #EhlersDanlos #hEDS #MCAS #HSD #Hypermobility #NEISvoid #MedEd #FOAMed #MedTwitter #Doctors #Nurses #Zebras #Psychology #Trauma #MedTrauma

It was a fantastic day at WM50 awards WMLieutenancy. Thank you to noninator Andy Mullaney. Dudley won, and all the amazing volunteers

September is Pain Awareness Month, as you are all probably much too well aware! We feel you... Understanding the #EDS Pain Maze: buff.ly/3Z8Yu3H #EhlersDanlosSyndrome #hypermobility #hEDS #HSD #Fibromyalgia #Pain #CPP #Spoonies #NEISvoid #Disability

🎗️🌍 Today is World Suicide Prevention Day. For many in the Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD) communities, living with chronic pain, isolation, and misunderstood symptoms can take an emotional toll. 💔 We want to remind you that you are not

I can't believe it's twelve today. Since my twelve months since my National Diversity Awards ceremony. A huge thanks to my nominators Artifacts CEP and Nushra Mansuri نوشرا منصوری. Karen McCormick spotted me looking Glam lol IMPACT

🎤 Meet the Team 🎶🎸 Behind every project are people with passion and purpose. 💛 YLYS Donation page: ylys.org.uk/donate #CareExperienceResearch 💕 #StrongerTogether 🙌 #ChristmasNumberOne 🎵🎸 #YLYS 🌍

🎶 The Wait is Over – The Song is Out Now! 🎄✨ Stream it. Share it. Let’s make some noise! 🎵 Help raise awareness & inspires change 🌍 🎧 Listen at YouTube Music 🎧 Listen at Amazon Music #CEP #StrongerTogether #LiverpoolUniversity #ChristmasNo1

Wow...This is incredible!! #Christmas #ChristmasSongs #ChristmasSong #Children #CareExperienced #CareLeavers #Fostering #SocialWork #ChildrensHomes

Here is Your Life Your Story #Christmas Song can you please support - watch it, like it on #YouTube, download it, share it to your networks help us get the important messages out there 🙏 I think you'll agree that Rach's words resonate deeply 💜 youtu.be/dj9qUtdKiNg?si…

open.spotify.com/track/61r8Vw7I…

Have you listened to this amazing #Christmas song written by one of our incredible #CareExperienced adults...It speaks to our inner children validating their experiences...Stream on Spotify & Apple Music, add to your playlist, share with your networks #BeTheDifference

We received some beautiful goodies earlier this week for us to share with care experienced parents! 💙 A huge thank you to Artifacts CEP - we're so grateful for your kindness, and we can't wait to pass these on! 💌✨

🔗 Reserve your place eventbrite.co.uk/e/the-power-of… Let's change the conversation. Let’s change the culture. Because the words we choose — matter.

A great opportunity for others to understand the power of your words on others.

Powerful read from the other side of the story