The Ehlers-Danlos Society

📢 The Countdown to the 2025 International Scientific Symposium Begins! 🌎 Pathways to Progress: A Decade of Insights and Innovations in EDS & HSD 🇨🇦 Join the world’s leading experts, researchers, and healthcare professionals in Toronto, Canada, from September 17-21, 2025—or attend virtually from anywhere in the world! 🔬 What to Expect: ✔️ Groundbreaking research on the Ehlers-Danlos syndromes (EDS) & hypermobility spectrum disorders (HSD) ✔️ Cutting-edge diagnostic and treatment advancements ✔️ Interactive workshops led by specialists ✔️ Networking opportunities, expert discussions & a gala dinner Be part of the future of EDS & HSD care!🔗Register today: https://lnkd.in/evquPZdt #EDS #HSD #ScientificSymposium #MedicalResearch #Genetics #ChronicIllness #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #Healthcare #HealthProfessionals #Researchers #Toronto #CanadianHealthcare

“I’m taking part in The Ehlers-Danlos Society's Walk and Roll to help raise awareness and support our patient community—people who inspire me every single day.” - Dr. Dacre Knight Dr. Dacre Knight is a general internal medicine physician and a faculty member in the EDS ECHO program. He is passionate about improving early diagnosis, treatment access, and physician education for people living with EDS and HSD. Through his work, he helps shape a more informed and compassionate healthcare system—one that listens, believes, and supports. Dr. Knight explained why he's taking part this May: “Raising awareness for EDS and HSD is crucial for early diagnosis, proper treatment, and improved quality of life—everything our patients deserve. Increased understanding helps reduce misdiagnoses, supports essential research, and fosters a more inclusive society. Advocacy empowers patients, educates clinicians, and promotes better care across the board.” The EDS ECHO Walk and Roll: All Move, All Together is a global fundraising effort for May Awareness Month, bringing together EDS ECHO program facilitators, faculty, and staff to raise awareness and support for people living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). Together, our goal is to cover 2,000 km and raise $10,000 in support of The Ehlers-Danlos Society’s mission: advancing research, education, and access to care for people affected by EDS and HSD around the world. 👉 Support the challenge and donate here: https://lnkd.in/eUTCY-Fj You can also take on your own Walk and Roll Challenge! Learn more and request a fundraising pack today: https://lnkd.in/e6ZhjFaB #AllMoveAllTogether #WalkAndRoll #EDSECHO #MyEDSChallenge #MyHSDChallenge #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #TogetherWeDazzle

Micah is a musician and artist and shares his journey to a diagnosis of hEDS, and adapting his career and passions. "Where do I begin? I was diagnosed with hypermobile Ehlers-Danlos syndrome in May 2021 amidst the pandemic. I was 34 years old. Like many other people living with EDS, I was told my problems were all in my head. I didn’t have a very common situation growing up. My youngest brother was diagnosed with Neurofibromatosis 1 at the age of 5. By the age of 7, he had gone completely blind from an inoperable optic glioma. I was 14 when he was diagnosed. I dropped out of high school in 8th grade and started painting houses with a local contractor. Fast forward a few years; I found myself working in a custom cabinet shop. Not ideal at all! I started developing carpel tunnel in both wrists at 27 years old. There were times that I couldn’t lift a coffee mug the pain was so bad. What was I going to do? This is what I had most experience with. Come December 2016, and my thoracic 9 disc herniated into my vertebrae. This sent my entire universe into a world of pain. After several years of physical therapy, and losing my job. I started pursuing doctors for answers. It wasn’t like I had never been to the doctor for my issues. It was just always chalked up to be no concern. It wasn’t from going to doctors that got me diagnosed. Instead it was someone I had met through playing music that was advocating on social media. I started looking into EDS, and everything clicked. It wasn’t till I knew what to show my doctor that I was diagnosed. The importance of advocating! Being diagnosed was a really hard time for me. I had a lot of memories of my life flooding my head. I was unable to do the creative things that I love. It’s very important for people living with EDS to know that they have EDS. I hope to help others, so they won’t have to go through some of the trauma that I did…Music and artwork [and of course my dog Ember] are some of the few things that keep me from getting depressed. I am fortunate to have a family that supports me. I know that not everyone has that. I finished my associates degree Performing Arts in 2019 with honors. I currently work on writing Gypsy jazz inspired music, and hand paint leather jackets/vests. On occasion I’ll build a small piece of furniture. It’s just not good for my body. I would like to thank all those out there advocating. I’m not sure where I would be if I still didn’t know what was happening to me." - Micah https://lnkd.in/e6QqtYrc #MyEDS #HypermobileEDS #hEDS #Music #EDS #EhlersDanlosSyndrome

🌟EDS and HSD May Awareness Month Incentives – Earn Exclusive Rewards! To thank you for your dedication, we’ve created fundraising reward tiers with exclusive prizes, whether you're joining in the global Walk and Roll Challenge or taking on a fundraising challenge of your choosing. Raise over $60 for the first reward tier, an official t-shirt! Incentives are awarded based on the highest tier you achieve. You can find all incentives and fundraising tiers below, including details of how to request your fundraising pack to get started. Together we dazzle! 🌟Walk and Roll Challenge https://lnkd.in/e6ZhjFaB 🌟Fundraising Challenge https://lnkd.in/eGvarjFx Let us know what you're doing for awareness month this May! #MyEDSChallenge #MyHSDChallenge

🧡 May is EDS & HSD Awareness Month!⁠ ⁠ 🫂 Every May, our global community unites to raise awareness, share experiences, and drive progress for those living with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).⁠ ⁠ This year, our goal is to raise $100,000 for our mission to CARE——funding vital support for those impacted and the healthcare providers who care for them, improving access to diagnosis and treatment, driving groundbreaking research, and expanding education for healthcare professionals worldwide.⁠ ⁠ 🌐 No matter where you are in the world, you can take part in Acts of Awareness—challenges designed to raise awareness and funds in creative, accessible ways. There’s something for everyone:⁠ ⁠ 🚶🏽♀️♿ Join the Walk and Roll Challenge—move in a way that works for you to support the cause⁠ 🧡Request a building to be lit up orange ⁠ 📜Ask for a proclamation to recognize May as EDS & HSD Awareness Month⁠ 📣Take part in the social media challenge and amplify awareness online⁠ 🏫 Share brochures or host an awareness event at school, work, or in your community⁠ 🖼️Change your profile picture to show your support⁠ https://lnkd.in/eRHdAV-D 🧠Join the all-new Knowledge Challenge!⁠ ⁠ 💡 Lighting requests and proclamations often need to be submitted in advance—don’t wait! Make your requests as soon as possible.⁠ ⁠ 🦓 Earn exclusive incentives and a certificate of participation! Learn how to get involved at https://lnkd.in/gABpPEx9 #MyEDSChallenge #MyHSDChallenge #ZebraStrong #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder

My EDS Story @thattillyrose 📖🙏✨ ‘When I became seriously ill as a teenager, with a plethora of unexplained symptoms, I was sent from -ologist to -ologist like a hot potato 🥔. I spent years doing the rounds of waiting rooms, A&E departments and hospital wards 🚨. At one stage in my journey, I was diagnosed with hypermobile Ehlers-Danlos Syndrome but it was never presented to me as being accountable for my symptoms. I’d always been pretty flexible and simply thought I was ‘a bit bendy’ 🤸. 🚨 My medical situation reached a crescendo in 2022 when I collapsed on the stairs at home and could no longer walk. I began having gruelling metabolic and neurological attacks that no one could explain. I had a list of growing symptoms affecting every part of my body; everything from PoTS, to gastroparesis, muscle convulsions, MCAS and kidney dysfunction. I was certain I couldn’t have this many separate things wrong with me; surely there had to be a condition that explained them all. No one considered the effects of EDS or its co-morbidities. 🦓 After almost 3 months in hospital, I was about to be discharged with no diagnosis, on ‘comfort care’. At my most desperate, I decided I had nothing to lose by posting on my Instagram @thattillyrose and asking the world for ideas. The world answered 🌍✨. This ultimately led me to Germany where I was diagnosed with multiple vascular compressions, caused by underlying EDS 🩸. I’ve since learnt being bendy on the outside can 🟰 being bendy on the inside too. 📖✨ This all led to me being offered a publishing deal for my upcoming book ‘Be Patient’ all about my 20 year search for a diagnosis (ultimately underpinned by EDS), against the backdrop of a funny, heartfelt and, at times, shocking insight into patient life. ‘Be Patient’ was published this week and is available to order now at https://lnkd.in/enqMzQDC 🦓🦓🦓 It is part of my wider mission to impact patient care 🌼🌼🌼 In the last few years I have seen the devastating effects EDS first-hand. I am so grateful for the brilliant work The Ehlers-Danlos Society are doing to raise awareness and support patients!" 📣🩺 Follow Tilly's journey on https://lnkd.in/eD8hEtKb .

Join our Let’s Chat virtual support group on Zoom, starting in two hours!⁠ ⁠ Date: Wednesday, April 23rd⁠ Time: 9:00 am BST/ 8:00 pm AEST⁠ ⁠ The group is an open forum to discuss topics or questions you have with other community members. Whether you are new to EDS and HSD or have been diagnosed for years, this meeting is a great place to get support and hear tips and experiences from others.⁠ ⁠ You only need to register for a series of groups once. After you are registered, you will receive a reminder email each time the group meets.⁠ ⁠ We have many groups taking place each month suitable for different timezones.⁠ Learn more and register at: https://lnkd.in/eGerxEWu

Do you live near Durham, North Carolina? Join @stolen_identity_improv for an evening to benefit The Ehlers-Danlos Society this May! "On Saturday, May 17th, enjoy an evening of improvisational comedy at the Walltown Children’s Theatre in Durham, North Carolina. Watch local performers create comedy on the spot from audience suggestions! They say laughter is the best medicine… join us for a once-in-a-lifetime evening as we prove this old adage right! Performances are expected to be rated PG-13. Refreshments will also be available for a donation. Starring: Final Cut, Ladies of the Unknown, Lakehouse, and Stolen Identity." Special thanks to the @stolen_identity_improv team who has already raised over $650 towards their $2,500 goal! You can purchase tickets to the show here: https://lnkd.in/eweQrGwx #EhlersDanlos #EhlersDanlosSyndrome #Hypermobility #HypermobilitySpectrumDisorder #HSD #EDS #ZebraStrong #NorthCarolina #DurhamNC #MyEDSChallenge #MyHSDChallenge #EDSAwarenessMonth #HSDAwarenessMonth

🚶🏿♂️♿ Walk and Roll Fundraiser Spotlight: Dr. Chad Shepherd! Role: Presenter, EDS ECHO Program Profession: Chartered Clinical Psychologist 🦓 What is the Walk and Roll Challenge? The EDS ECHO Walk and Roll: All Move, All Together is a community fundraising challenge taking place throughout May Awareness Month. Facilitators, speakers, and staff from the EDS ECHO team are working together to cover 2,000 km and raise $10,000 in support of The Ehlers-Danlos Society’s mission. Every kilometer walked, rolled, or moved helps raise awareness and funds for critical education and research. Your support helps train more healthcare professionals, expand global care access, and improve the lives of people with EDS and HSD. 🗣️What motivated you to get involved in this Walk and Roll? “I’m taking part to help raise awareness of EDS—not only among medical professionals but also the wider public. Too many people are suffering needlessly because EDS is still poorly understood, often dismissed, and not accepted for the serious condition it is.” 🧡Why is raising awareness of EDS and HSD important to you? “Many individuals with EDS are told their symptoms aren’t real, or that it's all in their head. This lack of understanding causes deep and unnecessary harm. We need to reduce this suffering—and that starts with education and visibility.” About Chad: Dr. Chad Shepherd is a Chartered Clinical Psychologist and presenter in the EDS ECHO program. He is passionate about improving awareness, empathy, and psychological support for individuals living with EDS and HSD. Through his work in EDS ECHO, he helps healthcare professionals around the world better understand the complex mental health and quality-of-life challenges faced by this community. 👉 Donate or follow our progress here: https://lnkd.in/eUTCY-Fj #AllMoveAllTogether #WalkAndRoll #EDSECHO #MyEDSChallenge #MyHSDChallenge #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder #TogetherWeDazzle

Looking to connect with other people who are affected by EDS and hypermobility spectrum disorders (HSD)? Join our Let’s Chat virtual support group tomorrow on Zoom!⁠ ⁠ The group is an open forum to discuss topics or questions you have with other community members. Whether you are new to EDS and HSD or have been diagnosed for years, this meeting is a great place to get support and hear tips and experiences from others.⁠ ⁠ Date: Wednesday, April 23rd⁠ Time: 9:00 am BST/ 8:00 pm AEST⁠ ⁠ You only need to register for a series of groups once. After you are registered, you will receive a reminder email each time the group meets.⁠ ⁠ We have many groups taking place each month suitable for different timezones.⁠ Learn more and register at: https://lnkd.in/eGerxEWu