The Ehlers-Danlos Society

@ehlers-danlos.com

1761 Followers 94 Following

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

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.
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.
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.
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.
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.
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.
Research roundup: New research in EDS & HSD
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.
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.
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.
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).
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.
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.
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.
Rsearch Roundup. New Research in EDS & HSD. Magnifying glass and survey papers are shown as examples of research context.
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.
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.
Eliana smiles in a hospital bed in a princess dress.
Colorful promotional graphic for The Ehlers-Danlos Society Female Health Summit virtual conference. The design features soft pastel shapes and icons on a light gradient background. At the top, the Ehlers-Danlos Society logo appears above the large headline “Female Health Summit,” with the subtitle “Virtual Conference for Community Members and Healthcare Professionals.” Centered text reads “1 WEEK TO GO” in large bold letters. Along the bottom, a dark blue banner lists event details: “Saturday, March 7, 2026,” “8:45 AM – 5:30 PM EDT,” and “Online Webinar,” accompanied by small calendar, clock, and computer icons.
Banner for health advocacy featuring the Ehlers-Danlos Society ECHO and Project ECHO logos on the left, the headline “HEALTH ADVOCACY” across the center, and a photo on the right of diverse people stacking their hands together in a gesture of unity and support. Text at the bottom reads “Improving care in EDS & HSD.”
“Promotional graphic for The Ehlers-Danlos Society’s Giving Tuesday campaign. Text reads: ‘Giving Tuesday – December 2, 2025 – Two Weeks To Go!’ A stylized zebra heart replaces the ‘V’ in ‘Giving.’ On the right, a smiling woman holds a young child who has their arms around her. The background is white and purple with soft decorative shapes.”
EDS ECHO Summit on Mental Health recordings. Virtual conference for community members and healthcare professionals. Includes Ehlers-Danlos Society ECHO and Project ECHO logos.
"Infographic titled 'Common Symptoms of Dysautonomia' by The Ehlers-Danlos Society. It shows seven illustrated human figures with icons representing symptoms: tachycardia (fast heart rate), hypotension (low blood pressure), dizziness/lightheadedness, gastrointestinal dysmotility (problems moving food through the digestive system), temperature and sweating dysregulation, sleep problems, and bladder issues."
Screenshot of the Guava app showing customizable daily check-in reminders. Users can snooze reminders or log symptoms such as fatigue, joint pain, food, energy, and activity. Text highlights that reminders help boost consistency and reveal symptom patterns.
Guava symptom logging interface with a body map highlighting joint pain locations and an entry form for severity, date, and time. Text states patients can record EDS and POTS symptoms such as joint instability, GI issues, brain fog, and tachycardia, with voice or photo input.
Cover page with teal background and bold title: “How to Use Guava to Track Patient Progress – EDS, POTS, and beyond — one place for patients and providers.” Serves as the introduction to a guide for tracking patient health data.
Three Lumia ear cuff devices in gold, rose gold, and silver next to a charging case. An inset shows the device worn on the ear. Text reads: “Experience Lumia Today. Available Now at lumiahealth.com. HSA/FSA We take HSA/FSA Cards! Now wear it your way!”
Person stretching outdoors in athletic clothing, wearing the Lumia ear device. A graph labeled “Compression” shows an increase from 40 to 70. Text reads: “Find Compression That Works For You. Compression wear fits every body differently. Lumia helps you see which pieces support your Flow most, so you can do more of what’s actually helping.”
Smiling person walking outdoors holding a coffee cup while wearing the Lumia ear device. A graph labeled “Dessert” shows values dropping from 70 to 40. Text reads: “Let Your Meals Lift Your Flow, Not Weigh It Down. Food is deeply personal. Lumia helps you see how food choices affect your Flow, helping you fuel and hydrate smarter.”
Close-up of a person wearing a small metallic ear cuff device on the upper ear. Text reads: “LUMIA. Your Body Is a Story That Deserves to Be Seen. Meet the First Wearable That Tracks Blood Flow to Your Head. See What You Feel, Finally.”
Promotional banner for The Ehlers-Danlos Society 2025 International Scientific Symposium. Text reads: “PATHWAYS TO PROGRESS: A Decade of Insights and Innovations in EDS & HSD. 1 WEEK TO GO.” Event details: September 17–21, 2025, 9 AM–6 PM EDT, Toronto, Canada, and virtually worldwide. Background images show people viewing scientific posters and attending a conference, with a Canadian flag in the top right corner.
Pyridostigmine for POTS Pyridostigmine improves symptoms of POTS by enhancing nerve-to-muscle communication and autonomic nervous system tone in ways that stabilize heart rate and blood pressure with standing.
2. Ketotifen for MCAS Ketotifen is often helpful for managing MCAS by stabilizing mast cells and reducing allergic symptoms.
rthm DIRECT 3 Treatments for POTS and MCAS That Can Help EDS Patients →
Graphic for 'Let's Chat: Parents' virtual support group. The design features a light blue world map background with a laptop displaying a video conference grid of blurred participants. Speech bubble icons with a person and a zebra are shown above the text.
The promotional image is an advertisement for the 2025 International Scientific Symposium hosted by The Ehlers-Danlos Society. It features a bold, professional layout with a blend of teal, blue, and green tones. At the top, the society’s logo—a stylized zebra head—is displayed next to the event title. The subtitle reads "Pathways to Progress: A Decade of Insights and Innovations in EDS & HSD," indicating the focus on Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders. A large callout in the center of the image announces "EARLY BIRD PRICING ENDS JULY 31!" in all capital letters within an outlined speech bubble shape. Below, two bullet points highlight additional information. The first uses a calendar icon and reads "Limited Time Remaining! International Scientific Symposium." The second, accompanied by a Canadian flag icon, states "Join us at: Toronto Canada and virtually worldwide," signaling a hybrid in-person and virtual event format. The background features faded imagery of past symposium scenes with attendees, computers, and presentation equipment, along with a translucent Canadian flag to emphasize the location.
A promotional graphic for The Ehlers-Danlos Society features an illustration of two hands exchanging a red heart. One hand is dark brown and reaches from the bottom, while the other is dark blue and reaches from the top. The heart has a small white plaster on it. On the right side, the text reads: “Give us a BOOST and help us win £2,000” followed by the website “movementforgood.com.” The Ehlers-Danlos Society logo with a zebra head is displayed above the text. At the bottom are the logos for "Movement for Good" and "Benefact Group."
Zebra logo in a disability pride month flag.
A group photo of diverse individuals from The Ehlers-Danlos Society, many of whom are wearing red clothing, standing in front of a red background with a heart-shaped logo containing a zebra head. Above the group is white text that reads, "The Ehlers-Danlos Society wears #REDS4VEDS," promoting awareness for Vascular Ehlers-Danlos Syndrome (VEDS).
Promotional image for the Ehlers-Danlos Society ECHO program. At the top are two logos: one for the Ehlers-Danlos Society ECHO, featuring a zebra head, and the other for Project ECHO. Below the logos, there's an icon of open hands with a heart above them, followed by the text: "Everyone affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders deserves great care." The phrase "deserves great care" is in red. At the bottom of the image, four smiling individuals—a young child, a young adult, a senior, and another adult—are seated closely together, representing diverse ages and ethnic backgrounds, with a faint world map in the background.
This image is a medical information graphic focusing on signs and symptoms of vEDS (Vascular Ehlers-Danlos Syndrome) and its effect on the cardiovascular system. The layout is divided into three main sections: 1. **Left Sidebar:** A vertical menu lists different body systems or areas affected by vEDS, including: - Cardiovascular (highlighted in blue) - Chest and Lungs - Gastrointestinal - Skin - Musculoskeletal - Eyes - Mouth and Throat - Feet - Pregnancy 2. **Center:** A human body diagram shows the cardiovascular system in red (arteries) and blue (veins). Major arteries are clearly illustrated, emphasizing the vascular network throughout the body. 3. **Right Panel:** Informational text under the cardiovascular section details symptoms related to the cardiovascular system: - **Arterial aneurysm** (not expanded) - **Arterial dissection** (expanded): Describes arterial dissection as a tear in the artery wall, which separates its layers, leading to potential life-threatening leakage. Specific mention is made of "aortic dissection" as a severe condition. - ⚠️ A warning note highlights that arterial dissection can be life-threatening and requires emergency medical treatment. - **Arterial rupture** and **Early onset varicose veins** are collapsed options. The overall design uses clean lines, bold headings, and color coding to emphasize the cardiovascular system, with blue and red highlighting veins and arteries.
A screenshot of the homepage of The Ehlers-Danlos Society website. At the top is the organization's logo and name, followed by a navigation bar with menu items including "Who We Are," "EDS & HSD," "Support," "Get Involved," "Events," "EDS ECHO," "Research," "Health Professionals," and "News." A language selection dropdown menu is open, showing multiple language options such as English, Español, Français, العربية, and more. To the right are icons for search, user account, messages, and a blue "Donate" button. Below the navigation is a large banner with the word "CARE" spelled out in oversized orange letters, each filled with a photo of a diverse individual. Below each letter is a corresponding word: "Care," "Access," "Research," and "Education." The background is light grey with an orange accent area at the bottom displaying the start of a section labeled "I am an...".
Sarah smiling sitting at a desk with a Society stand and leaflets.
A digital illustration compares equality vs. equity using three individuals of different heights and abilities reaching for apples on a tree. On the left, labeled "Equality," all three individuals stand on identical platforms, but the shortest person and the person with a mobility aid still cannot reach the apples. On the right, labeled "Equity," each person is given a different number of platforms based on their individual needs, allowing all of them to reach the apples. The image is branded with The Ehlers-Danlos Society’s logo, reinforcing the message of fairness in healthcare access for people with rare diseases.
Image Description: A promotional banner for the "Road to 2026" initiative related to Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) classification revision. On the left, a stylized zebra head logo with a green arrow encircling it accompanies the bold text "ROAD TO 2026." Centered in the image is a blue translucent die labeled "D.I.C.E," with a DNA helix extending from its sides, symbolizing "Data, Inclusion, Collaboration, and Excellence." Below, bold black and green text reads: "Share your lived experience. Have your say and be part of the 2026 EDS and HSD classification revision." On the right, two smiling individuals wearing black Ehlers-Danlos Society and ZebraStrong shirts pose together against a white background with a soft green circular design. The overall design uses a white, black, and green color scheme, emphasizing community engagement and research participation.
interested what's affecting others' symproms? arrow to next slide
Image Description: A testimonial graphic for The Zebra Club app with a green background featuring subtle abstract patterns. At the top, The Zebra Club logo, a stylized zebra head, appears in white next to the app’s name in bold white text. Below, a user review from Google Play is displayed in white, sans-serif font. The review praises the app for helping with hypermobility, offering both strength and calming videos. A highlighted portion in bold text states: "It's one of the key well-being anchors in my life, I have used it everyday for a year and a half." A small purple heart emoji is included before the phrase "highly recommend." The review is attributed to "Leo" from Google Play, shown in smaller white text at the bottom right.
Image Description: A promotional graphic for a research study on Ehlers-Danlos Syndrome (EDS). The left side features bold black and blue text reading, "Understanding EDS: A Research Study on Healthcare Specialists’ Knowledge of hEDS." The background fades from white to a soft gradient towards the right. On the right side, there is a photograph of a person using a laptop, with the screen displaying "RESEARCH SURVEYS" in bold text and a clickable "START" button. The user's hands are visible on the keyboard, suggesting engagement with the survey.
silver ring splints on display
Image Description: A promotional advertisement for Nurosym, a wearable vagal neuromodulation device by Parasym. The ad features a close-up of a smiling older woman with light skin and blonde hair wearing the device, which clips onto her ear. The text highlights Nurosym as "The Most Studied Vagal Neuromodulation Device In The World," describing its benefits, including anxiety relief, improved gut health, increased HRV, and better sleep. In the lower-left corner, there is an image of the Nurosym device, a sleek, oval-shaped controller with buttons on top. At the bottom of the ad, a dark green banner includes the logo of the Ehlers-Danlos Society Global Learning Conference 2025, indicating Nurosym as a sponsor. The event details, "February 7-9, 2025, Brisbane, Australia," are displayed in white and gold text.