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The Ehlers-Danlos Society @ehlers-danlos.com · 02/10/2026

Dysautonomia can occur in people with Ehlers-Danlos syndromes (EDS) & hypermobility spectrum disorders (HSD). Most research on #dysautonomia in #EDS & #HSD has focused on #hypermobileEDS (hEDS) and HSD. Dysautonomia has also been reported in people with other types of EDS, including #cEDS & #vEDS.

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The Ehlers-Danlos Society @ehlers-danlos.com · 02/10/2026

October is Dysautonomia Awareness Month. ⁠ ⁠ Dysautonomia, also called autonomic dysfunction, is a group of disorders that affect the autonomic nervous system.⁠ ⁠

Graphic titled “Symptoms of Dysautonomia” showing seven human silhouettes illustrating common symptoms: tachycardia (fast heart rate), hypotension (low blood pressure), dizziness or lightheadedness, gastrointestinal dysmotility (problems moving food through the digestive system), temperature and sweating dysregulation, sleep problems, and bladder issues.

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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

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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

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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

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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

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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 · 02/09/2026

Health professionals can claim up to 11 Continuing Education credits for live sessions.⁠ Learn more and register today at www.ehlers-danlos.com/precision-me... #EhlersDanlossyndromes #EhlersDanlossyndrome #Research

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 · 02/09/2026

This global networking event will bring together clinicians, established and early-career scientists, patient representatives, policymakers, and other key stakeholders to advance collective understanding and action in genetically defined types of EDS.⁠

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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

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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/

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Dr. Clair's Corner - The Ehlers Danlos Society

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The Ehlers-Danlos Society @ehlers-danlos.com · 11/08/2026

To help address these challenges, The Ehlers-Danlos Society launched a Request for Applications (RFA) with approximately $300,000 USD in anticipated funding: www.ehlers-danlos.com/research-fun... #ResearchFunding #EhlersDanlosSyndromes #HypermobilitySpectrumDisorders

ehlers-danlos.com

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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

For more information or to learn how you can get involved, reach out to Randi Christodoulou, P2P Fundraising Coordinator, at randi.christodoulou@ehlers-danlos.com #EhlersDanlossyndromes #HypermobilitySpectrumDisorders #Fundraising #TwitchCreators #Streamers #StreamForChange

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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026

Whether you stream on #Twitch, create videos, game, make art, host live content, or have an online community ready to make a difference, we want you to be part of it!

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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.

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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026

If you'd ever like to share your story we be grateful to listen and share it: www.ehlers-danlos.com/share-your-s...

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Share Your Story - The Ehlers Danlos Society

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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026

It does not mean that only people with those types of EDS and HSD may experience this, it's where the research shows evidence. I'm sorry to hear you are also struggling with this issue, it shows the importance of more research in the ultra-rare types of EDS, and sharing of experiences.

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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026

Speech and Language Therapist, Mr. Gary Wood, explains vocal problems seen in these conditions, with helpful visuals and descriptions: youtu.be/mkrq8wP3wNU?... Have you experienced voice issues, and what have you found that has helped?⁠ ⁠

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ENT Symptoms and Treatment for EDS and HSD - Gary Wood | English (EN)

YouTube video by The Ehlers-Danlos Society

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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026

Speech-language pathologist, Christina Semonick, SLPD, CCC-SLP, explains voice concerns in EDS and HSD and how they can be managed: youtu.be/MozfVT-CKkQ?...

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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 · 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

I am so sorry, you are so incredibly strong.

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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

Thank you for sharing Bee. I'm sorry you've been through so much. Your paper art is beautiful.

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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026

🎥Watch more videos on TMJ in our Ear, Nose, Throat, and Dental YouTube playlist: youtube.com/playlist?lis... ⁠ Have you experienced TMJ issues, and what have you found that's helped?⁠

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The Ehlers-Danlos Society @ehlers-danlos.com · 03/08/2026

Professor Leslie Russek shares A Physical Therapist's Approach to Managing TMJ Pain, exploring why TMJ issues occur in these conditions, and offering practical strategies to help manage symptoms and improve jaw function: youtu.be/3Q97naiRTPY?... ⁠

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A Physical Therapists Approach to Managing TMJ Pain - Leslie Russek - 2024 GLC

YouTube video by The Ehlers-Danlos Society

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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

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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

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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

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The Ehlers-Danlos Society @ehlers-danlos.com · 28/07/2026

Whether you stream on #Twitch, create videos, game, make art, host live content, or have an online community ready to make a difference, we want you to be part of it!

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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.

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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

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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

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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

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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

Researchers from academic institutions, hospitals, nonprofit and independent research organizations, industry, and multidisciplinary teams worldwide are encouraged to apply. Application deadline: August 14, 2026 Learn more and apply here: www.ehlers-danlos.com/research-fun... #ResearchFunding

ehlers-danlos.com

Research Funding Opportunities - The Ehlers Danlos Society

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The Ehlers-Danlos Society @ehlers-danlos.com · 06/07/2026

With approximately $300,000 USD in anticipated funding, the Society is seeking proposals focused on: ● Novel biomarkers and diagnostic panels ● Laboratory-based diagnostic tools ● Patient stratification approaches ● Pilot, proof-of-concept, & confirmatory studies with strong translational potential

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The Ehlers-Danlos Society @ehlers-danlos.com · 06/07/2026

To help address these challenges, The Ehlers-Danlos Society is launching a new Request for Applications (RFA) to support research focused on improving the identification, classification, and diagnosis of #MCAS, particularly in people with #EDS or #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.

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