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The Ehlers-Danlos Society

@ehlers-danlos.com
1.8K followers 95 following 266 posts

The global nonprofit organization dedicated to change and progress in the world of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) ehlers-danlos.com

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The Ehlers-Danlos Society @ehlers-danlos.com · 28/09/2026
"Receiving my diagnosis didn’t change who I was, but it changed how I understood myself. Suddenly, years of seemingly unrelated symptoms made sense." www.ehlers-danlos.com/story/disa-k/ #HypermobileEDS #hEDS
ehlers-danlos.com
I don’t want my diagnosis to be the end of my story - The Ehlers Danlos Society
If you had met me years ago, you probably would have seen someone who looked healthy, capable, and full of energy. What you wouldn’t have seen was the constant effort
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The Ehlers-Danlos Society @ehlers-danlos.com · 17/09/2026
Do you have a favorite adaptive device or mobility aid?⁠ ⁠ Mars Lombardi talks about dynamic disability & various types of adaptive aids and devices that can be helpful when managing pain and fatigue: youtu.be/03VfEULK65w?... #PainAwarenessMonth #EhlersDanlosSyndromes #HypermobilitySpectrumDisorder
youtu.be
2023 Treatment: Adaptive Aids & Devices to Help with Symptoms - Mars Lombardi
YouTube video by The Ehlers-Danlos Society
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The Ehlers-Danlos Society @ehlers-danlos.com · 14/09/2026
September is #ChiariAwarenessMonth. Dr. Clair Francomano explains the symptoms of Chiari Malformation, when to seek neurological evaluation, and resources for support: youtu.be/iCayugcfB6U?... #chiarimalformation #PainAwarenessMonth
youtu.be
Doctor Explains Everything You Need to Know About Chiari Malformation
YouTube video by Doctor Clair
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The Ehlers-Danlos Society @ehlers-danlos.com · 13/09/2026
Dr. Sarah Cohen-Solomon explains how #HSD and #hEDS comorbidities affect day-to-day activities, pacing techniques and approaches, and why it's important for the short and long term, and picking back up after a setback: youtu.be/qOujPfvwplQ?... #PainMonth #HypermobileEDS
youtu.be
2025 Symposium - How do I Keep Going When Everything Hurts? - Dr. Sarah Cohen-Solomon
YouTube video by The Ehlers-Danlos Society
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The Ehlers-Danlos Society @ehlers-danlos.com · 11/09/2026
Dr. Clair Francomano explains what #SmallFiberNeuropathy is, how it affects the body, and how it is diagnosed. Learn how doctors identify the underlying causes and what treatment options are available, from disease-modifying therapies to symptom management: youtu.be/UGCKkZ9NTts?... #PainMonth
youtu.be
Small Fiber Neuropathy in EDS: Symptoms, Causes, and Diagnosis
YouTube video by Doctor Clair
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The Ehlers-Danlos Society @ehlers-danlos.com · 09/09/2026
"Elliana was diagnosed with classical Ehlers-Danlos syndrome (cEDS) through genetic testing when she was 3 years old. She has also received secondary diagnoses of #POTS, hemiplegic migraines, and primary and secondary #chronicpain." www.ehlers-danlos.com/story/ellian... #PainMonth
ehlers-danlos.com
Elliana’s Story: Growing Up with Classical Ehlers-Danlos Syndrome (cEDS) - The Ehlers Danlos Society
Early Signs & Diagnosis Elliana was diagnosed with classical Ehlers-Danlos syndrome (cEDS) through genetic testing when she was 3 years old. Her diagnosis was the result of a de novo
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The Ehlers-Danlos Society @ehlers-danlos.com · 02/09/2026
Today is the final day to register for the Precision Medicine in Genetically Defined Ehlers-Danlos Syndromes event, taking place September 3-4.⁠ Join this event in Ghent, Belgium, or watch virtually worldwide in over 60 languages.⁠
Promotion graphic for the Precision Medicine for Genetically Defined EDS, September 3-4.
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The Ehlers-Danlos Society @ehlers-danlos.com · 29/08/2026
Dr. Mark Pimentel is the executive director of the MAST Program at Cedars-Sinai. Dr. Pimentel describes specific #gastrointestinal motility disorders associated with some types of #EDS and #HSD, such as #SIBO and gastroparesis, in a video now on our YouTube Channel: youtu.be/F3GKf_WotEw?...
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The Ehlers-Danlos Society @ehlers-danlos.com · 19/08/2026
☑️Take The Ehlers-Danlos Society 2026 Community Feedback Survey! ⁠ What matters most to you? We want to hear directly from our community about your experiences and priorities: wkf.ms/4ybTdrb #EhlersDanlossyndromes #HypermobilitySpectrumDisorders
Wide-format The Ehlers-Danlos Society Community Feedback Survey graphic with the Society’s zebra logo, large “COMMUNITY FEEDBACK SURVEY” text, and a checklist icon. Four people are shown participating in activities with laptops or a notebook.
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The Ehlers-Danlos Society @ehlers-danlos.com · 15/08/2026
Join Dr. Clair Francomano, a leading Medical Geneticist, professor, and trusted voice in the #EDS and #HSD community, as she breaks down your most pressing questions and complex medical jargon: www.ehlers-danlos.com/clairs-corner/
ehlers-danlos.com
Dr. Clair's Corner - The Ehlers Danlos Society
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The Ehlers-Danlos Society @ehlers-danlos.com · 11/08/2026
📢Applications for #MCAS research funding opportunity close August 14⁠ ⁠ One of the biggest challenges for people living with #MastCellActivationSyndrome (MCAS) is getting an accurate diagnosis. Many experience years of uncertainty, inconsistent testing, and difficulty finding answers. ⁠ ⁠
Ehlers-Danlos Society graphic announcing a research funding opportunity for the development of objective diagnostic approaches and biomarkers for Mast Cell Activation Syndrome (MCAS). The blue-and-white graphic features scientific imagery including cells, molecular structures, a DNA strand, laboratory glassware, and a researcher in a white coat looking through a microscope.
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Reposted by The Ehlers-Danlos Society
Connected Boutique @connectedboutique.bsky.social · 06/08/2026
Many people wait years for an EDS diagnosis. This August, Connected Boutique is proud to support @ehlers-danlos.com #StreamForChange campaign to raise awareness, inspire conversations, and help support research, education, and advocacy. Donate tiltify.com/@connected-f... #ehlersdanlos #EDS
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Reposted by The Ehlers-Danlos Society
Connected Boutique @connectedboutique.bsky.social · 07/08/2026
This August, Connected Boutique is proud to be part of @ehlers-danlos.com Stream for Change. 💜 We’re using our platform to support the EDS & HSD community, and turn content into meaningful change. Donate or learn more 💜 tiltify.com/@connected-f... #streamforchange #ehlersdanlos #EDS
tiltify.com
Tiltify - Made for Fundraisers
We give you the tools to engage with your donors and raise more for your charity
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The Ehlers-Danlos Society @ehlers-danlos.com · 04/08/2026
Traditional “one-size-fits-all” approaches do not address the complexity experienced by those with the #EhlersDanlossyndromes. Precision medicine—care tailored to genetic, biological, and personal factors—offers hope for more effective management strategies: www.ehlers-danlos.com/precision-me...
ehlers-danlos.com
Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes - The Ehlers Danlos Society
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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026
We’re turning content into impact with Stream for Change all month! This creator-led fundraising campaign bringing together streamers, gamers, content creators, and online communities to raise awareness and funds for people impacted by EDS and HSD.
Promotional graphic for Stream for Change 2026 by The Ehlers-Danlos Society. Large white text reads, “Your Content Can Change Lives.” Supporting text says, “Every stream, post, video, and supporter helps us move our mission forward.” On the right, a smiling person wearing headphones speaks into a microphone while streaming from a laptop. A Stream for Change 2026 shield logo appears in the lower-right corner. A white call-to-action button at the bottom left reads, “Join Stream for Change 2026.” The background features a blue and teal gradient with subtle abstract patterns.
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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026
Some people with #periodontalEDS (pEDS), #hypermobileEDS (hEDS), or #hypermobilityspectrumdisorders (HSD) have trouble producing or sustaining their voice, also known as #dysphonia.⁠
Educational infographic from The Ehlers-Danlos Society about dysphonia (difficulty producing or sustaining the voice). It explains that some people with periodontal EDS, hypermobile EDS (hEDS), or hypermobility spectrum disorders (HSD) may have a hoarse, weak, breathy, or strained voice. Possible causes include poor coordination or hypermobility of the vocal cords, reduced vocal cord vibration due to tissue differences, and reduced movement of the cricoarytenoid joint, which controls vocal cord position and movement. An illustration shows a person holding their throat to indicate voice or throat discomfort.
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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026
Thank you so much for your support and fundraising for this incredible community!
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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026
The temporomandibular joint (TMJ) connects the lower jaw to the skull. It plays an important role in speaking and chewing.⁠ ⁠ Some people with #classicalEDS, #hypermobileEDS, or #hypermobilityspectrumdisorders may experience problems with this joint or the muscles and ligaments that support it.⁠ ⁠
Educational infographic from The Ehlers-Danlos Society about temporomandibular joint dysfunction (TMJ). The title reads "Temporomandibular Joint Dysfunction." The graphic lists common symptoms: clicking, popping, or grinding when moving the jaw; difficulty opening the mouth fully; jaw locking when opening the mouth; and pain around the jaw, ear, or temples. It notes that these symptoms can make speaking more difficult. Below the text is a side-view illustration of a skull with the temporomandibular joint highlighted in red to show the affected area.
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The Ehlers-Danlos Society @ehlers-danlos.com · 31/07/2026
🗣️Christina Semonick, SLPD, CCC-SLP, is a speech-language pathologist. Christina explains what communication and swallowing differences are common in #EDS and #HSD, and how Speech and Language therapy may be able to help you. ⁠Watch now: youtu.be/MozfVT-CKkQ?... #Hypermobility
youtu.be
EDS, HSD, & the Orofacial Region - Chewing, Swallowing - Christina Semonick - 2024 GLC
YouTube video by The Ehlers-Danlos Society
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The Ehlers-Danlos Society @ehlers-danlos.com · 31/07/2026
Is it just me, or is this a full-time job? Dr. Valerie Iovine Rogers, PT, DPT, explores the physical, emotional, and cognitive demands of navigating complex chronic illness and discusses tools to support you. youtu.be/J5opro2enB8?... #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
youtu.be
2025 Symposium - Is it Just Me, Or Is This A Full Time Job? - Dr. Valerie Iovine Rogers
YouTube video by The Ehlers-Danlos Society
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The Ehlers-Danlos Society @ehlers-danlos.com · 28/07/2026
Create. Stream. Change Lives. This August, we’re turning content into impact with Stream for Change, a month-long creator-led fundraising campaign bringing together streamers, gamers, content creators, and online communities to raise awareness and funds for people impacted by EDS and HSD.
Promotional graphic for Stream for Change 2026 by The Ehlers-Danlos Society. Large white text reads, “Your Content Can Change Lives.” Supporting text says, “Every stream, post, video, and supporter helps us move our mission forward.” On the right, a smiling person wearing headphones speaks into a microphone while streaming from a laptop. A Stream for Change 2026 shield logo appears in the lower-right corner. A white call-to-action button at the bottom left reads, “Join Stream for Change 2026.” The background features a blue and teal gradient with subtle abstract patterns.
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The Ehlers-Danlos Society @ehlers-danlos.com · 23/07/2026
⏰ Last chance to register! The 2026 Global Learning Conference starts tomorrow, July 24, and it's your final opportunity to secure your place. 🔗https://www.ehlers-danlos.com/events/2026-global-learning-conference/ #GLC2026 #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
Promotional graphic for the Ehlers-Danlos Society Global Learning Conference 2026. At the top left is the conference logo and the text: “The Ehlers-Danlos Society Global Learning Conference 2026 – Connecting the Stripes: Exploring Comorbidities in EDS and HSD.” Large teal and purple text reads, “Final Chance to Register.” Event details below list: July 24–26, 2026; in-person and virtual event; Courtyard Dallas Allen at the Allen Event Center, Dallas, USA. The right side features a circular network design with photos from past conferences, including a keynote speaker at a podium, attendees posing and waving together, two attendees smiling, and a participant standing in the conference hall. The background is a soft light blue gradient with curved abstract accents.
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The Ehlers-Danlos Society @ehlers-danlos.com · 13/07/2026
Dr. Clair Francomano explains what LDN is, how it may reduce inflammation and central sensitization, what the current research shows, and important safety considerations. youtu.be/fakxlYoCsrw?... #Pain #LDN
youtu.be
How Low Dose Naltrexone May Support EDS Pain and Inflammation
YouTube video by Doctor Clair
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The Ehlers-Danlos Society @ehlers-danlos.com · 07/07/2026
Vascular Ehlers-Danlos syndrome (vEDS) is a heritable connective tissue disorder that makes the connective tissue very fragile, particularly in the blood vessels and hollow organs. vEDS can cause life-threatening complications. Learn more about #vEDS: www.ehlers-danlos.com/veds/ #VascularEDS
Infographic from The Ehlers-Danlos Society titled "What is Vascular Ehlers-Danlos Syndrome (vEDS)?" The graphic explains that vascular Ehlers-Danlos syndrome (vEDS) is a rare inherited connective tissue disorder that makes connective tissue, especially in blood vessels and hollow organs, extremely fragile. It notes that vEDS can lead to life-threatening complications including aneurysms, arterial dissections and ruptures, and bowel rupture.

The infographic lists key features of vEDS:

Easy, unusual, or unexplained bruising
Arterial aneurysm, dissection, and rupture, particularly before age 40
Carotid-cavernous sinus fistula occurring without trauma
Bowel perforation, most commonly in the sigmoid colon
Spontaneous pneumothorax
Uterine rupture during the third trimester of pregnancy
Characteristic facial features, including prominent eyes, a narrow nose, thin lips, and attached or absent earlobes

The design features a white background with subtle gray wave patterns, The Ehlers-Danlos Society logo at the top, and the title highlighted in dark pink.
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The Ehlers-Danlos Society @ehlers-danlos.com · 07/07/2026
Congratulations to Sarah Clark MSc, who has been awarded the 'Research Impact Award' at Bournemouth University's Research Conference. Sarah is completing a part-time MRes exploring how diagnostic delays for #autistic people with #EDS and #HSD can be reduced. www.ehlers-danlos.com/story/sarah-...
ehlers-danlos.com
Congratulations Sarah Clark - The Ehlers Danlos Society
I am proud to share that I was awarded the Research Impact Award at Bournemouth University’s Faculty of Media Science and Technology Postgraduate Research Conference this week, recognizing both my
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The Ehlers-Danlos Society @ehlers-danlos.com · 06/07/2026
This week's research roundup includes research on fluoroquinolone use in #vEDS, and menopause research priorities in #rarediseases. Studies also investigated the cause of urinary symptoms in people with hEDS & barriers to care for people with #hEDS & #HSD: www.ehlers-danlos.com/research-rou...
Research roundup: New research in EDS & HSD
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The Ehlers-Danlos Society @ehlers-danlos.com · 06/07/2026
📢 New Research Funding Opportunity for MCAS Diagnostics One of the biggest challenges for people living with Mast Cell Activation Syndrome (MCAS) is getting an accurate diagnosis. Many experience years of uncertainty, inconsistent testing, and difficulty finding answers.
Promotional graphic from The Ehlers-Danlos Society announcing a research funding opportunity. The slide features the Society logo, a blue banner reading "Research Funding Opportunity," and the title "Development of Objective Diagnostic Approaches and Biomarkers for Mast Cell Activation Syndrome (MCAS)." On the right, a scientist in a laboratory coat and blue gloves looks through a microscope in a modern laboratory. The background includes subtle DNA strands, molecular graphics, and laboratory glassware, reinforcing the biomedical research theme.
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The Ehlers-Danlos Society @ehlers-danlos.com · 01/06/2026
Not all stripes are black and white 🌈🦓⁠ ⁠ The Ehlers-Danlos Society recognizes and celebrates Pride Month with the LGBTQIA+ members of our dazzle! 🏳️‍🌈⁠ ⁠ #PrideMonth #EhlersDanlossyndromes #HypermobilitySpectrumDisorders
Zebra Pride by The Ehlers-Danlos Society. Two zebras stand forehead-to-forehead against a light gray background with soft white bokeh effects. The zebra on the left is painted in rainbow colors, while the zebra on the right has traditional black-and-white stripes. The Ehlers-Danlos Society logo appears in the upper left corner. Large rainbow-gradient text at the bottom reads “Zebra Pride.” The image symbolizes pride, diversity, and community within the Ehlers-Danlos community.
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The Ehlers-Danlos Society @ehlers-danlos.com · 29/05/2026
Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of #HSD. youtu.be/93u8edKfbMQ?...
youtu.be
Signs You May Have HSD (Hypermobility Spectrum Disorder) | Symptoms, Diagnosis & Management
YouTube video by Doctor Clair
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Reposted by The Ehlers-Danlos Society
sweetwildthing 🌿 @sweetwildthing.bsky.social · 28/05/2026
Let's Celebrate Our Stripes! 🌈 It's my last day fundraising for @ehlersdanlos.bsky.social! 💜 Join us for cozy Palia as we continue to amplify our voices! ✨ ✿ twitch.tv/sweetwildthing ✿ Donate → tilt.fyi/kz5QLGBQVD #charity #fundraising #eds #twitch #livenow #streamer #palia #cozy #hobbit #ehlers
A picture of sweetwildthing smiling while pointing up at a logo of The Ehlers Danlos Society.
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The Ehlers-Danlos Society @ehlers-danlos.com · 26/05/2026
For many people living with #EhlersDanlossyndromes (EDS) or #hypermobilityspectrumdisorders (HSD), diagnosis is only the start. The next challenge is navigating care, being heard, finding support, and accessing joined-up services. ⁠
Promotional graphic for The Ehlers-Danlos Society Model of Care Listening Labs virtual event series. Large blue gradient banner reads “LISTENING LABS” above the title “The Lived Experience.” Icons and labels indicate this is a virtual event for participants in Canada, the USA, and the UK. The right side shows a woman wearing headphones during a video call at a computer. Blue and teal wave graphics run along the bottom.
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The Ehlers-Danlos Society @ehlers-danlos.com · 25/05/2026
Edward was diagnosed with PLOD1-related kyphoscoliotic Ehlers-Danlos syndrome in 2019, and shares his experiences with kEDS and oesophageal achalasia. youtu.be/7_6nUn7z8Cs?...
youtu.be
Edward - "Living with PLOD1-Related kyphoscoliotic Ehlers-Danlos syndrome (kEDS)"
YouTube video by The Ehlers-Danlos Society
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The Ehlers-Danlos Society @ehlers-danlos.com · 21/05/2026
The call for abstracts is now open for the 'Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes' event. The hybrid event will take place September 3-4, in Ghent, Belgium, and livestreamed globally. The deadline for abstract submissions is Sunday, June 7th: shorturl.at/LFKel
Promotional graphic from The Ehlers-Danlos Society encouraging abstract submissions for a conference titled “Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes: Genetic and Allelic Variation in Decision-Making About Diagnosis, Natural History, and Treatment.” The design features purple and blue DNA-themed graphics on a light gray background. Large text reads “Submit Your Abstract.” A highlighted box states the submission deadline: “Sunday, June 7, 2026 at 11:59 PM ET (US and Canada).
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The Ehlers-Danlos Society @ehlers-danlos.com · 19/05/2026
🥡 One meal. Real progress. This Friday, May 22, your Panda Express order can help change the future for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)!
Promotional graphic announcing a Panda Express fundraiser supporting The Ehlers-Danlos Society. Large red and black text states that 28% of sales using code 9015310 on Friday, May 22, will be donated. The Ehlers-Danlos Society support logo appears on the left. On the right are several Panda Express food containers filled with noodles, rice, vegetables, and entrees, alongside a takeout bag and stacked white plates. Text at the bottom notes the fundraiser is available at Panda Express locations nationwide.
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The Ehlers-Danlos Society @ehlers-danlos.com · 14/05/2026
This week's Research Roundup features recent studies on #myopathicEDS (mEDS) and #hypermobileEDS (hEDS). ⁠ ⁠ These studies explore #genetics, chronic pain, swallowing difficulties, and parenting perspectives in rare conditions. www.ehlers-danlos.com/research-rou...
ehlers-danlos.com
Research Roundup: New Research in EDS and HSD - The Ehlers Danlos Society
This week’s Research Roundup features recent studies on myopathic EDS (mEDS) and hypermobile EDS (hEDS). These studies explore genetics, chronic pain, swallowing difficulties, and parenting perspectiv...
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The Ehlers-Danlos Society @ehlers-danlos.com · 11/05/2026
There are 13 different types of #EhlersDanlossyndrome, each with distinct features and risks. In this video, medical geneticist Dr. Francomano clearly explains the key differences between #EDS types: youtu.be/w62qVQvznYM?...
youtu.be
13 EDS Types Explained: Symptoms, Genetics, and Key Differences
YouTube video by Doctor Clair
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Reposted by The Ehlers-Danlos Society
DeVi | ♿️ 💅 Nail Tech & Variety Vtuber 🎮 @deviant-nails.bsky.social · 05/05/2026
I'm taking part in the @ehlersdanlos.bsky.social 31 Days Social Media Challenge this May for EDS Awareness Month! Day 5! What Helps Me Most Having a routine helps me manage my pain and fatigue, knowing what energy I can spare means I can be social when it counts #MyEDSChallenge #MyHSDChallenge
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Reposted by The Ehlers-Danlos Society
Milena Makani | Contemporary Art @milenamakani.bsky.social · 06/05/2026
ART FUNDRAISER FOR MEDICAL RESEARCH Acquire a painting that speaks to you and fund science. 50% of all art sales are donated to The Ehlers-Danlos Society, advancing research into Ehlers-Danlos Syndromes. I live with hEDS. Access to research changed my life. #eds #abstractpainting #contemporaryart
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The Ehlers-Danlos Society @ehlers-danlos.com · 03/05/2026
Dr. Clair Francomano explains how connective tissue and collagen play a key role in the Ehlers-Danlos syndromes (EDS).⁠ Watch the video now on YouTube: youtu.be/w2BIlqVqSgc?... #EDSAwarenessMonth #ehlersdanlossyndrome #ehlersdanlossyndromes
youtu.be
What are Connective Tissue and Collagen? | Ehlers-Danlos Syndromes
YouTube video by Doctor Clair
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Reposted by The Ehlers-Danlos Society
DeVi | ♿️ 💅 Nail Tech & Variety Vtuber 🎮 @deviant-nails.bsky.social · 01/05/2026
I'm raising money for the @ehlersdanlos.bsky.social during May for Ehlers Danlos Awareness Month! You can donate here!!! - tiltify.com/+the-eds-awa... You can also join the Tiltify team if you'd like to contribute that way and raise money with us!! #MyEDSChallenge #MyHSDChallenge
twitch.tv
DeViaNt_Nails_ - Twitch
Hi! I'm DeViaNt Nails!! But you can call me DeVi! I'm a lvl 3 Qualified Nail Tech from the UK using Twitch as a platform to practice Nail Art for Industry! I also play a ton of games, host Co-Working ...
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Reposted by The Ehlers-Danlos Society
DeVi | ♿️ 💅 Nail Tech & Variety Vtuber 🎮 @deviant-nails.bsky.social · 01/05/2026
The EDS Awareness Zebra Dino Colouring pages are back in my KoFi shop and all money made through any sales (including non-zeb dino's) will be going into the Donation pool for this month towards @ehlersdanlos.bsky.social !!! ko-fi.com/deviantnails...
ko-fi.com
Visit DeViaNt Nails's Shop!
I've opened a shop. Come take a look!
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The Ehlers-Danlos Society @ehlers-danlos.com · 30/04/2026
🤳🏽Starting tomorrow, May 1st! Join the Social Media Challenge.⁠ ⁠ Use the 31 daily themes (shown in the image) as prompts for your social media posts from May 1-31st to share your journey and raise awareness.⁠ ⁠
Poster titled “31 Days of EDS & HSD” for Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder Awareness Month 2026. The design features an orange and gray color scheme with a faint silhouette background and The Ehlers-Danlos Society logo. It lists daily prompts for a 31-day awareness campaign, including topics like “Introduce Your Journey,” “What Helps Me Most,” “My Appointment Essentials,” “Living With Comorbidities,” “A Message to Someone Newly Diagnosed,” “Growth I’m Proud Of,” and “Moving Forward Together.” A link at the bottom reads: bit.ly/31daysofEDSandHSD.
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The Ehlers-Danlos Society @ehlers-danlos.com · 23/04/2026
Join The Ehlers-Danlos Society's Fundraising Challenge or the Walk and Roll Challenge this May to earn t-shirts, totes, and fun incentives! 🧡⁠
Promotional graphic with the headline “Earn Exclusive Incentives!” showing two themed merchandise collections. On the left, a blue circle highlights “Walk and Roll Challenge” items including white T-shirts, a hat, tote bag, mug, and stickers with the Walk and Roll logo. On the right, an orange circle displays “Fundraising Challenge” items including white T-shirts, a hat, tote bag, tumblers, and stickers with research and education-themed branding.
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The Ehlers-Danlos Society @ehlers-danlos.com · 20/04/2026
Research in the EDS and HSD community has been busy recently, with studies covering genetics, clinical features, and approaches to care. This week's Research Roundup includes eight studies.
Rsearch Roundup. New Research in EDS & HSD. Magnifying glass and survey papers are shown as examples of research context.
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The Ehlers-Danlos Society @ehlers-danlos.com · 14/04/2026
The Ehlers-Danlos Society was delighted to award Professor Chantal Berna Renella and Dr. Aurore Fernandez, of Lausanne University Hospital, Lausanne, Switzerland, a $300,000 grant for their study titled Biomarker Identification in #hEDS/#HSD Sub-Phenotypes: www.ehlers-danlos.com/research-gra...
ehlers-danlos.com
Research Grant Awardee: Biomarker Identification in hEDS/HSD Sub-Phenotypes. - The Ehlers Danlos Society
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Reposted by The Ehlers-Danlos Society
MaseTheMoose @masethemoose.bsky.social · 12/04/2026
Jimmies rustled, ghasts flabbered. THANK YOU for all of the love today for @ehlersdanlos.bsky.social 🦓 The adventure continues on Tues @ 15:00BST on twitch.tv/masethemoose so please swing by to yap or chill! If ya fancy a look, our fundraiser can be found here: tiltify.com/@masethemoos...
tiltify.com
Tiltify - Made for Fundraisers
We give you the tools to engage with your donors and raise more for your charity
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The Ehlers-Danlos Society @ehlers-danlos.com · 27/03/2026
EDS ECHO at The Ehlers-Danlos Society invites applications for the EDS ECHO #HealthcareStudent Program for 2026–2027. This unique program is supported by a generous donation and is offered at no cost to participants: www.ehlers-danlos.com/eds-echo-hea... #EhlersDanlossyndrome #HSD
Infographic promoting the EDS ECHO Healthcare Student Program by the Ehlers-Danlos Society and Project ECHO. The left side lists program features: a monthly core learning program; access to EDS ECHO sessions for drop-in participants, clinicians, allied health professionals, and pediatrics; and access to events and resources including virtual learning events, programs reviewing the 2026 classification criteria, a library of past expert presentations, networking opportunities, and mentoring. The right side shows a world map with global connection points and two healthcare professionals, one examining a patient’s arm, symbolizing global collaboration in healthcare education.
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The Ehlers-Danlos Society @ehlers-danlos.com · 23/03/2026
We are proud to collaborate with the Program in Global Primary Health Care based at Harvard Medical School @harvardmed.bsky.social Office for Research Initiatives and Global Programs, and the Brigham and Women’s Hospital @brighamandwomens.bsky.social Division of Global Health Equity.
A presentation slide with the headline “Diagnosis Is Only the First Step” in large teal text. Below, black text explains a collaboration with the Program in Global Primary Health Care at Harvard Medical School’s Office for Research Initiatives and Global Programs, and the Brigham and Women’s Hospital Division of Global Health Equity. On the right, the Ehlers-Danlos Society logo and the words “Models of Care” appear in teal and black. The background is light with subtle abstract shapes.
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The Ehlers-Danlos Society @ehlers-danlos.com · 22/03/2026
"Elliana was diagnosed with classical Ehlers-Danlos syndrome (cEDS) through genetic testing when she was 3 years old. We have learned a great deal through our own experience, research, and by connecting with other cEDS families." 🔗 www.ehlers-danlos.com/story/ellian...
Eliana smiles in a hospital bed in a princess dress.
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